MDF Newsletter Content Issue 46 April 2015

Autumn Issue 46
April 2015
R25.00 incl. VAT
Wheel-O-Thon
Grace Mahlangu
receives a new
wheelchair
Philip Hojgaard-Olsen
meets Prince Edward

Made in Germany

DF
Magazine
05 MDF notice board
06 National news
10 MD information
18 Disability news
MD INFORMATION
10 Guide for parents with MD children
12 Have you been diagnosed with MD?
Events
06 Wheel-O-Thon
26 Muscle Riders
44 A tribute to Harley-Davidson
People
27 Body Change
28 Philip Hojgaard-Olsen meets Prince Edward
30 Jonathan Groenwald aka 2J Harmonix
31 Living with Spinal Muscular Atrophy
Regular Features
14 Health
22 Recipes
32 Special Olympics South Africa
34 Doctor’s corner
35 The view from down here
42 Sandra’s thoughts on …
Research
36 Update on research into Myotonic dystrophy type 1
37 Correcting the genetic defect in Duchenne muscular
dystrophy
38 New clinical trial for SMA drug
39 New research on the effects of vitamin supplements
on FSH
C O N T E N T S
Published by:
Muscular Dystrophy Foundation of SA
Tel: 011 472-9703
Fax: 086 646 9117
E-mail: national@mdsa.org.za
Website: www.mdsa.org.za
Publishing Team:
Managing Editor: Pieter Joubert
Copy Editor: Keith Richmond
Co-ordinator & Advertising: Rae Bagus
Design and Layout: Divan Joubert
Printer: Qualimark Printing
Future Issues:
August 2015
(Deadline: 30 June 2015)
The Muscular Dystrophy Foundation
of South Africa
We are a non-profi t organisation that supports
people affected with muscular dystrophy and
neuromuscular disorders and endeavours to
improve the quality of life of its members.

From The
For 40 years the Muscular Dystrophy Foundation of South Africa has
reach out a helping hand to those in need. You can fi nd innovative ways
to touch the hearts and minds of people by raising awareness and funding
to support our cause and help those who need assistance. We need
passionate people who want to make a difference and also fi nd exciting
ways to get more people involved in our mission by establishing fundraising
initiatives.
We are grateful for and deeply appreciate the support and work that
dedicated people so willingly do to support our organisation. The work
that we do would not be possible without the support we receive from
volunteers and donors. Thank you for telling family and friends of our organisation.
In this issue you will read about personal stories and as usual fi nd MD information and research articles.
You are welcome to comment on articles and share your thoughts or ask questions.
You can claim glory for the hard work that others have done, but you will be more deeply satisfi ed when
you have contributed something yourself. Let us all work together and make a difference and a contribution
that counts.
We look forward to a year with great opportunities.
Regards
Pieter Joubert
The Spring 2014 issue of our magazine (no.44) contained an article by Lee Leith with the title
“My journey with muscular dystrophy” (pages 36–37). Unfortunately the author’s surname was
incorrectly spelt as “Leigh”. We apologise for the error.
Letters to the Editor
Thanks for a magazine of high quality. Articles are informative and I read the magazine from cover to cover.
Each issue is kept should I want to check something later. Keep up the good work.
Greetings
Patrick Markotter, Westonaria
About Muscular Dystrophy
The terms “muscle-wasting conditions”, “muscle disease”, “muscular dystrophy”, “neuromuscular conditions”
and “neuromuscular disorders” all describe a large group of conditions which affect either the muscles,
such as those in the arms and legs or heart and lungs, or the nerves which control the muscles.
There are many different types of muscular dystrophy. Different conditions affect different muscles. The
severity of conditions and how they affect individuals varies greatly from person to person. Most conditions
are progressive, causing the muscles to gradually weaken over time. People’s mobility is affected and most
conditions lead to some sort of disability.
Muscle disease affects babies, children and adults, both males and females, and ethnic groups. Conditions
can be inherited or occur where there is no family history.
If you have just received a diagnosis of muscle disease, whether you suspected it or not, it’s likely to be a
huge shock to you. We’re here to help you.
4

Subscription and contributions to the
magazine
We publish three issues of MDF Magazine
a year and you can subscribe online
to the magazine or by calling your nearest
branch.
If you have any feedback on our publications,
please contact the National Office
by email at national@mdsa.org.za
or call 011 472-9703.
Get all the latest news on the fight
against muscle-wasting conditions and
the latest research updates. It is our editorial
policy to report on developments
regarding the different types of dystrophy
but we do not thereby endorse any
of the drugs, procedures or treatments
discussed. Please consult with your own
physician about any medical interventions.
If you would be interested in sharing
your inspirational stories, please let us
know and we’ll be in touch to discuss
this with you.The Foundation would
love to hear from affected members,
friends, family, doctors, researchers or
anyone interested in contributing to the
magazine. Articles may be edited for
space and clarity.
MDF SA database
If you know people affected with muscular
dystrophy or neuromuscular disorders
who are not members, please
ask them to contact us so that we can
register them on our database. If we do
not have your current e-mail and postal
address, please contact your branch so
that we can update your details on our
database.
How can you help?
Branches are responsible for doing their
own fundraising to assist members with
specialised equipment. Contact your
nearest branch of the Muscular Dystrophy
Foundation of South Africa to find
out how you can help with fundraising
events for those affected with muscular
dystrophy.
Fundraising
Crossbow Marketing Consultants (Pty)
Ltd are doing invaluable work through
the selling of annual forward planners
and children’s books with CDs. These
products can be ordered from Crossbow
on 021 700-6500.
MDF ::
MDF support information
For more information about the Muscular
Dystrophy Foundation, the benefits
of being a member and details on how
to become a member, call your nearest
branch.
CAPE BRANCH (Western Cape,
Northern Cape & part of Eastern
Cape)
E-mail: cape@mdsa.org.za
Tel: 021 592-7306
Fax: 021 592-7306
Address: 3 Wiener Street, Goodwood,
7460
Banking details: Nedbank, current
account no. 2011007631, branch code
101109
GAUTENG BRANCH (Gauteng,
Free State, Mpumalanga, Limpopo
& North West)
E-mail: gauteng@mdsa.org.za
Tel: 011 472-9824
Fax: 086 646 9118
Address: 12 Botes Street, Florida Park,
1709
Banking details: Nedbank, current
account no. 1958323284, branch code
192841
Pretoria Office
E-mail: swpta@mdsa.org.za
Tel: 012 323-4462
Address: 8 Dr Savage Road, Prinshof,
Pretoria
KZN BRANCH (KZN & part of
Eastern Cape)
E-mail: kzn@mdsa.org.za
Tel: 031 332-0211
Fax: 031 767-2355
Address: Office 7, 24 Somtseu Road,
Durban, 4000
Banking details: Nedbank, current
account no. 1069431362, branch code
198765
General MD Information
Cape Town
Lee Leith
Tel: 021 794-5737
E-mail: leeleith@mweb.co.za
Gauteng
Pieter Joubert
Tel: 011 472-9824
E-mail: gauteng@mdsa.org.za
Parent Project SA
Maxine Strydom
Tel: 031 762-1592
Cell: 083 290 6695
E-mail: 031 767-0584
Duchenne MD
Cape
Win van der Berg (Support Group)
Tel: 021 557-1423
Penny Cato
Tel: 021 671-8702
Gauteng
Jan Ferreira (Support Group – Pretoria)
Tel: 012 998-0251
Estelle Fichardt
Tel: 012 661-7970
Charcot Marie Tooth (CMT)
Hettie Woehler
Cell: 084 581 0566
E-mail: hettie@leefvoluit.co.za
Facioscapulohumeral (FSHD)
Francois Honiball
Tel: 012 664-3651
Barry Snow
Cell: 083 66 66 270
E-mail: barry.snow@worleyparsons.
com
Nemaline Myopathy
Adri Haxton
Tel: 011 802-7985
Spinal Muscular Atrophy (SMA)
Zeta Starograd
Tel: 011 640-1531
Lucie Swanepoel
Tel: 017 683-0287
Spinal Muscular Atrophy (Adult
SMA)
Justus Scheffer
Tel: 012 331-3061
E-mail: justusscheffer@gmail.com
General Support Group Gauteng
East Rand
Zigi Kerstholt
Tel: 011 907-5057
Cell: 082 499 9384
E-mail: heinzigi@mweb.co.za
5

National
WHEEL-O-THON
By Rae Bagus
The Muscular Dystrophy Foundation hosted the first ever Wheel-
O-Thon at the Cradlestone Shopping Mall between 30 February
and 1 March 2015.
All I can say is ‘WOW!’ What a success in both creating awareness
and raising funds.
To all our sponsors, without you this could not have been the
exciting weekend that it was. Thank you to:
Cajees Watches for the three beautiful watches
Sun Suite Hotel in Cape Town for a three-night getaway
Holiday Inn for a two-night getaway
Town Lodge Roodepoort for a one-night getaway
Mr Joe de Broize for the T-shirts
Amka for the beautiful products
Checkers Liquor Store for the ice throughout the weekend
KFC for the lunch supplied for the volunteers for Saturday
Mr Daya from Daya’s Pharmacy and Mr Hendricks from Hendrix
Pizza and Coffee Cafe for donations towards feeding the volunteers
The general public passing by, either wheeling or just donating –
thank you all!
Both the educators and the learners from Kings School West Rand
and also Trinity College volunteered throughout the weekend. In
total we had 140 volunteers. A Big Ups to you guys, you were wonderful
to work with. To the principals, staff and parents, you truly
have a bunch of really wonderful children.
A very special thanks to Ms Stacey Farrell, an educator from Kings
School, who is at most times in a wheelchair herself. You made a
huge impact!! Also, from Parktown Girls High, thank you Zahirah
Bagus for your help. Ms Alia Fredericks, thank you for your time.
Our very sincere thanks to Mr. Siraj Rykliff for transporting all our
equipment to and from the Wheel-O-Thon.

Muaath Moosa, many thanks for operating the
sound system, and Niyaaz Moosa for supplying
the sound system.
Zaakira Raymond from the MDF, thanks for the
long, hard hours before, during and after the
event.
There will be another Wheel-O-Thon in Gauteng
(venue to be announced) before its next stop in
KZN.
The competition was hectic. Resego came in third
place with a wheel time of 1hr 20min. Dominique
wheeled for 2hrs 30min. Then Maria Luchies, a
teacher, tried to beat the record and wheeled for
3hrs 15min. Dominique came back with a vengeance
and wheeled for 3hrs 30min, giving her
1st place.
All the winners were from Kings School and had
their team mates cheering them on. A prize giving
was held at Kings School on 13 March 2015.
National
7

National :
Welcome Zaakira
Hi, my name is Zaakira Raymond. I am 21 years old. I have two brothers aged 24 and 15. I
come from a family of teachers, including my parents. I matriculated from Hoërskool Die
Burger in 2011. I then chose to study early childhood development. I worked for a crèche
for a few months and then ran my own crèche. I am currently engaged and will be tying
the knot later in this year. I love socialising and I love baking.
My passion has always been to work with and for people. This was ingrained in me as
part of my development. Since the 1st of January 2015 I have been working for the Muscular
Dystrophy Foundation as a direct mail and administrative assistant in the fundraising
department.
CASUAL DAY
The celebration of Casual Day (Gauteng leg) took place on 6 March 2015 at Gallagher Estate. The venue and breakfast were
awesome as usual. David O’Sullivan led the proceedings. Lois Strachen, a visually impaired person, gave a most inspiring
and motivational speech.
Among the distinguished guests were Mr South Africa, Armand du Plessis; the well-known radio DJ and rapper 2J Harmonix
(Jonathan Groenewald), who is a muscular dystrophy ambassador; and another rapper, Khumo Moyane.
From the MDF National Office, Rae Bagus & Zaakira Raymond; and from the MDF Gauteng Office, Portia Mokone (Senior
Social Worker), Mulanga Kharidzha and Matsepo Makabate (Social Workers).
8

MD
A Guide for Parents with
Children who have
Muscular Dystrophy
Compiled by: MDF Gauteng Branch
Introductory comments
Every new day holds promise for children everywhere, even
for youngsters affected with muscular dystrophy. The only
difference is that children with muscular dystrophy cannot
do things they enjoy without your assistance, patience and
understanding and an ever-present helping hand. They will
be whatever you enable them to be. Your role will not be
easy, but remember that you can find the strength and guidance
to care for them.
Parents’ natural grief upon learning that their child has muscular
dystrophy can make it difficult to absorb all the implications
at once. It is therefore important to visit the doctor,
counsellor or social worker to discuss the matters of importance
to you. Genetic counselling may also be discussed, especially
after the initial implications of the diagnosis have
sunk in.
What do you tell your child?
Very young children will not understand any details of the
diagnosis, but those who are already aware of their problem
will welcome an opportunity to discuss what is happening to
them. How much a child should be told depends on their own
curiosity and emotional make-up. As a general rule, do not
volunteer disturbing information needlessly. An opportunity
might arise when they hear something relevant on the radio
or television – many have a surprising understanding of the
disorder. Do you need to prepare your child about needing
a wheelchair? They will welcome it without explanation or
ceremony when the time comes. It will offer them so much
freedom and security that they will soon be showing it off
with pride and delight.
What about me? (Brothers or sisters)
Because special attention is given to the affected child, other
children within the family may feel jealous. Obviously
everyone wishes a disabled child to live the fullest life possible,
and the nature of MD and the deterioration of strength
make more attention and assistance necessary for the
affected child. This is not favouritism but essential care, and
this should be carefully explained to the child’s siblings. It is
therefore important to help brothers and sisters to realise that
they are equally loved and encourage them to have empathy
with the affected child and behave lovingly towards them.
Family and
social aspects
The natural inclination of parents is to protect their disabled
child from knowledge of the disorder and from the apparent
cruelty of the outside world, but this could lead to overprotection.
This may frustrate the child’s normal impulse
towards independence, especially in early adolescence, and
may hamper their ability to make friends. Friendship both
within the family and outside is very important for the affected
person. Parents should not be embarrassed about
exposing their child within the community. In this respect,
young disabled adolescents should be granted the space and
independence to test their own emotions, creativity and social
capability and should be encouraged and supported to
develop their leadership abilities.
Education
Education is important to everyone, including physically disabled
individuals, who have the same intellectual potential
as anyone else. Physical challenges at school such as moving
from class to class, climbing stairs and carrying a suitcase
should be overcome by arrangement with the headmaster,
teacher and schoolmates. The presence of occasional pupils
in wheelchairs in any ordinary school may in fact be an advantage
to everyone, giving the affected children the opportunity
to live in a regular environment, and their schoolmates
the opportunity to recognise the problems of the disabled.
Special schools for the disabled, however, give them opportunities
to see themselves as only one of a great many
disabled people. Another advantage of special schools could
be the services available, such as physiotherapy, nursing supervision
and a chance to learn to use special equipment and
techniques to overcome physical difficulties. The best solution
should be sought for each individual child. Often the
child will first attend the so-called ‘normal’ (regular) school,
but they should change to a special school before their needs
become critical and result in an emergency situation.
10

MD
General health measures
Your child’s general health is not necessarily affected by
their muscular dystrophy condition, but the following points
should be noted:
- Affected children will be very susceptible to colds, which
could lead to bronchitis and pneumonia. This is dangerous as
their muscle weakness makes them less able to cough
effectively. If you are worried, call a doctor. Never neglect
a cold. Act swiftly.
- It is important to avoid unnecessary bed rest or other forms
of immobility, as this could in fact speed up the weakening
of the muscles.
- Obesity is a common and very trying problem. Generally
it is due to the combination of overeating with the inevitable
lack of muscular activity to “burn up” the excess intake. Everybody
feels sorry for affected children and too many people
can think of no better way to express their feelings than
to provide the child with sweets and luxuries. There could be
no more misplaced kindness. Excess weight restricts mobility
even more and puts further strain on the carers. Restrict
carbohydrate foods and if possible improve protein intake.
If these habits are followed from an early age, no sudden
changes will need to be made during the early teen years
when other frustrations are already occurring.
- Normal routine immunisations should be carried out.
Doctors recommend annual prophylaxis against influenza.
The emotional picture – child and parent
Looking after a disabled youngster is not an easy task and
there is more than the normal share of problems.
- One parent-made problem is the tendency to be too anxiously
sympathetic, resulting in overprotectiveness. A feeling
of self-sufficiency and independence is so necessary
for the child’s mental health. The parent should institute a
schedule of everyday activities – simple things that the child
knows they can do with little or no help. They will learn selfrespect
that comes from achievement, which is so vital for
maintaining an interest in life.
own needs. Try to stay involved with social, community or
other matters of interest to you. Allow yourself short breaks
of a few hours every week. You need time off to retain perspective.
Conclusion
There cannot, of course, be a single right answer to every
problem. Every child’s set of circumstances is different, and
the advice given should be shaped to fit the individual. But
remember that you are not alone with your problem. The
Muscular Dystrophy Foundation of South Africa will give
you as much support as it can. Join the Foundation and meet
others with similar problems. Comfort and advise each other
by telephone or through support group meetings.
The role of the Muscular Dystrophy
Foundation (MDF) in South Africa
The MDF supports individuals affected with muscular dystrophy,
and their families, by offering emotional support,
information (including a series of fact sheets), referrals to
genetic counselling and other clinics, formation of support
groups, and assistance with special equipment when possible.
Creating public awareness of muscular dystrophy is
also an important aspect of our work, since the MDF relies
solely on contributions from its members and other donors to
provide an ongoing support service. Through our magazine,
members are kept informed of the activities and receive national
and international research updates. Please contact any
office of the MDF if you require information about any of
our activities or programmes.
Please note
The treatments mentioned above are for general information
purposes only. Please consult your physician or other health
care specialist in individual cases.
- Television can be an enjoyable pastime but it can easily become
an escape at which children spend most of their waking
hours. There is nothing wrong with TV in moderation.
- Naturally, at times, feelings of depression could occur within
the family, but it is not common for children who have
muscular dystrophy. Parental feelings of guilt and a tendency
to blame oneself is often the reason for depression. The sooner
you rid yourself of this blame the better. Nothing about the
situation is your fault.
- This brings us to the point of your own needs. In your devotion
to looking after your disabled child, do not forget your
11

MD
Have you been
diagnosed with MD?
If you have just received a diagnosis of a muscle-wasting
condition, whether you suspected it or not, it’s likely to be
a huge shock to you. When you are first diagnosed it can
be difficult to take in what it means for you, your family,
friends and colleagues. Make sure that you take your time
to gather information about your condition. There are 70
different types of muscle-wasting conditions and they all
affect people differently.
Has your child been diagnosed with
MD?
When a child is diagnosed with a muscle-wasting condition
it comes as a complete shock. People react in different
ways to the news. Ensure that you equip yourself with all
information about the condition. Children with muscular
dystrophy or neuromuscular conditions face a number of
challenges throughout their school life. They may have difficulty
learning or accessing school facilities, or some might
face discrimination in their educational life. Talk to teachers
at school so that they can understand and inform learners
of your child’s condition. If a child cannot function in a
normal school, you should look for a school that accommodates
children with special needs. Your child will adapt
more easily and you will find that he/she is a happy child.
Please remember the following:
People react differently and there is no right or wrong way
to react, and your feelings are likely to differ from day to
day. You may feel more fragile on some days than on others,
but in the long term there will be more good days than bad.
Dealing with a diagnosis can be very challenging when the
vision you had for your child’s future is changed by something
beyond your control.
Allow time for yourself so that you can come to terms with
what lies ahead for you as a parent. Talk to family and
friends and go for counselling.
Different parents may cope in individual ways with the
situation. Respect your differences and accept that this is
normal. Do not blame yourself in any way for your child’s
condition.
For more information, please contact your nearest branch.
Adapted from information provided by the Muscular Dystrophy
Campaign (http://www.muscular-dystrophy.org/
newly_diagnosed).
FSHD (facioscapulohumeral
muscular dystrophy) is a
degenerative neuromuscular
disease with no cure...YET!
FSHD FACTS
► FSHD can cause progressive loss of skeletal muscle and
make even the simplest daily tasks impossible.
► FSHD occurs with equal frequency in both males and
females.
► The frequency of FSHD may be three times higher than
reported due to undiagnosed cases.
► 95% of people with FSHD develop noticeable muscle
weakness by the age of 20.
► FSHD is estimated to affect 1 in 8,333 people around the
world.
► FSHD is among the most prevalent forms of muscular
dystrophy.
► Around 20% of people with FSHD will become
dependent on a wheelchair or scooter.
► Did you know that genetic diagnostic and prenatal
diagnostic tests are available for FSHD?
► FSHD can prevent the eyes from closing, even during
sleep. Learn the symptoms.
► Typically, FSHD muscle weakness is first noticed in the
face, shoulders, upper arms and by foot drop.
► A parent with FSHD has a 50% chance of passing it to
each child.
► Weakness in muscles used for breathing can shorten the
lives of FSHD patients.
► Did you know? FSHD can affect multiple members in a
single family across generations.
► 30% of new FSHD patients have no prior family history
of the disease.
► An early sign of FSHD is the inability to whistle or sip
through a straw.
► Many FSHD patients say if there was one thing they
wished they could still do, it would be to smile.
► FSHD can cause significant hearing loss and
abnormalities in the eye.
► The age of onset for FSHD and the extent of muscle loss
vary from person to person.
► FSHD often causes shoulder blades to “wing” out.
Information provided by the FSH Society (https://www.
fshsociety.org)
12

TRAVEL
Disability
Mountain Zebra National Park
Wheels in the Bushveld
By Hilton Purvis
Regular readers will know that I enjoy the rich diversity of
animal and bird life which we are treated to in South Africa,
and of course the varied environments in which they are found.
This brings me in regular contact with our national parks since
they offer the most affordable means of appreciating this natural
heritage. I have written before about the accessible accommodation
offered by Addo Elephant National Park and the
Storms River Mouth Camp in the Tsitsikamma National Park.
Recently we returned to another favourite wheelchair accessible
park, the Mountain Zebra National Park (MZNP), near
the town of Cradock in the Eastern Cape.
The region is considered arid, with relatively sparse bushveld
vegetation suited more to open plains game. It is home to rhino,
buffalo, lion, cheetah, eland, kudu, gemsbuck, springbuck,
hartebeest, wildebeest and a wide range of smaller game, together
with an excellent cross-section of the birdlife. Of course
we mustn’t forget the mountain zebra, after which the park is
named. At first glance they appear to be like most other zebras,
but these zebs have some very distinct characteristics which
set them apart. I won’t detail the differences here, preferring to
leave it for you to investigate whilst you plan your trip.
bay, entrance and patio are all accessible. The kitchens are not
wheelchair accessible and one has to do some rearranging of
the furniture for dining purposes. The keywords here are “you
need able-bodied assistance”. The main reception area is accessible,
as is the restaurant, which offers breakfasts and dinners
as required. As the park has a relatively low visitor count,
its restaurant catering is of a more personal nature, and we
have had some of our most enjoyable park meals there.
MZNP is a small park, but it has the ability to capture your
attention. Perhaps it is the mix of geology and wildlife, or the
remote quietness, or the non-touristy atmosphere. Whatever it
may be, it will have you coming back again.
For more information view the SANParks official website
at :http://www.sanparks.co.za/parks/mountain_zebra/
MZNP itself consists of three main regions, the Rooiplaat
Loop, the Ubejane Loop, and the Kranskop Loop. All three
are noticeably different, with the Rooiplaat Loop being a more
mountainous area with some incredible geological formations.
Around every corner rock formations come into view which
boggle the mind as to how they were formed, and just what
is keeping them standing! The Ubejane Loop is more open
grasslands and plains sprinkled with zebras and their hooved
cousins. The southern Kranskop Loop is a classic bushveld
landscape of thorn trees, and home to the very curious and
highly amusing ground squirrel!
The park is geared towards self-driving game viewing although
they do offer guided daytime and night-time tours (which are
not necessarily wheelchair accessible, but which may be possible
if one is able to get into a game viewing vehicle). Its location
places it just outside of the mass tourist range radiating
out from Port Elizabeth. The result is that MZNP is noticeably
quieter than some of the more well-known national parks, with
no tour buses, and far fewer tourists. As an example, during
our first morning drive along the Rooiplaat Loop it was nearly
four hours before we encountered our first motor vehicle.
The wheelchair accessible cottages are spacious with full selfcatering
facilities and en-suite bathrooms. The cottage parking
13

Health
Nutrition and Feeding
By Annie Bagnall, Specialist Paediatric
Speech and Language Therapist, and Trak
Davies, Specialist Paediatric Dietician
Introduction
Within neuromuscular conditions there can be a range
of issues with feeding and nutrition. This may vary with
different diagnoses. Normal, healthy growth is measured
according to weight and height. Charts are available
which outline the ranges of weight which are considered
to be healthy. For people with neuromuscular
disorders this range is extended slightly to account for
different amounts of muscle. Growth patterns that may
require attention and monitoring are either being overweight
for height (an indication of excess nutrition), or
underweight for height (insufficient nutrition).
What causes someone to become overweight?
This is caused when energy used by the body is less
than energy eaten. In neuromuscular conditions it could
be due to a reduced ability to walk around (so less energy
is burned off) or increases in appetite (which may
be a side-effect of some medication eg steroids). Eating
an “average” portion of food in some cases may be
larger than the energy required and lead to too much
weight gain.
How can you lose extra weight?
Up until the end of the adolescent growth spurt all
children grow in height and require adequate nutrition
to grow. It is important that the diet is balanced
and takes into account the amount of energy a child
is using. Generally, prevention is better than cure. It is
easier to monitor and keep weight stable than lose it.
Different strategies can be used to lose weight. One is
increasing energy expenditure by exercising. This can
be difficult for individuals with limited mobility. Certain
exercises may not be beneficial and before starting an
exercise programme you should always discuss this
first with your clinician and/or physiotherapist. Eating
lower calorie foods (eg, fresh fruit and vegetables)
and less of the foods which are high in calories (eg,
those containing a lot of fat and sugar) can help weight
reduction in individuals with limited mobility. Banned
foods can become more desirable and it may be helpful
to still have some treats. Advice from a specialist dietician
can be helpful in setting goals and making more
specific suggestions.
What is underweight?
This is not putting on enough weight. Not putting on
weight is due to not having enough energy (calories)
14
in the diet. By frequently not being
well, weight may not be
maintained over a long period
of time. If not enough calories
are eaten, blood sugar
levels may also drop. This
can cause weakness, dizziness,
mood swings, hot/
cold flushes and shakiness.
There are a number of
reasons why children
with muscle disease
may be underweight:
It is a common misconception
that all children with a muscle
condition will be thin because of
their reduced muscle bulk or as a result
of loss of muscle or weakness. There
are a wide variety of shapes and sizes in individuals
with muscle conditions. While on one hand it
is easier for the thin child to perform some movements
and reduced weight makes transferring for parents/
carers easier, it is also important to realise that maintaining
good nutrition is fundamental to maintaining
good health. It is important to realise that, whatever
the cause, there are often strategies that can be used
to help lessen the problems associated with eating and
it is important to discuss these with a specialist.
• Nocturnal hypoventilation
Some children who have nocturnal hypoventilation
(not breathing well at nighttime) wake up with a headache
and do not feel well rested in the mornings and
as a consequence may have a reduced appetite.
• Illness
When children with a muscle condition become
unwell (eg, with a chest infection) they often lose
weight. This is because they may lose their appetite
and do not eat so much. At the same time, they
need more calories and protein than usual to fight off
an infection and help the body recover. Children can
also have increased requirements for repair when
they have had surgery and this is an important time
to make sure they a receiving the right amount and
kind of nutrition.
• Swallowing and chewing
Children with a muscle condition sometimes have
weakness of the muscles of the face and neck involved
in chewing and swallowing. Weakness in
these muscles can make chewing prolonged, particularly
if the food is hard, chewy or textured. Additional
problems that can be found in some children are
teeth malposition, limited jaw opening, high arched
palate or limited tongue movement. In order to overcome
these difficulties often children take a long time

Health
to eat or eat only a small amount of
food. Some children who eat like
this are labelled “fussy eaters” as
they will often avoid certain textures
and will opt for foods they
find easy to chew.
In some cases the muscles
involved in swallowing are
not well co-ordinated and the
child can be at risk of swallowing
problems. When food
or liquids go down the wrong
way (aspiration) the child may
cough and choke to try and
stop it. If food goes down the
wrong way and the child doesn’t
cough (silent aspiration) the food or
liquid passes into the lungs and could
cause a chest infection.
• Gastro-oesophageal reflux
Reflux is the backflow of stomach contents from the
stomach into the food pipe (oesophagus). Reflux
may be due to poor muscle tone or scoliosis and can
result in feeding problems. If an individual vomits or
has frequent small regurgitation of stomach contents
this can lead to pain and oesophagitis more commonly
referred to as heartburn (irritation of the oesophagus).
If the reflux is very frequent, the child will
often associate eating as being a painful experience
and not want to eat. This is known as “food aversion”.
If regurgitated food comes back into the throat
it could go down into the lungs and cause a chest
infection or choking as described above.
• Getting full quickly
Sometimes poor muscle tone in the stomach can
cause its contents to “empty out” slowly making a
child feel full quickly or not feel hungry. Again, this
can result in small volumes of liquids and solids being
taken.
• Reduced mobility
Reduced mobility can affect self-feeding abilities. A
child may be unable to lift cutlery to their mouth or
may be in an awkward position for feeding, or may
get progressively more tired during the course of
the meal. If the sitting position of a child is not good
because of a curvature of the spine or neck, chewing
and swallowing can become difficult. Because of
these difficulties, mealtimes can last a long time or
only small volumes are taken.
• Psychological/social factors
Some physical problems can lead to worries and
fears about eating. If an individual is reluctant to eat
or drink it may be because of a previous bad experience
with choking. Long mealtimes can also result
in a child feeling left out socially as their friends
may finish their meals earlier and leave the table.
Parental worries about poor weight gain and small
volumes can lead to over-enthusiastic approaches
to eating such as lots of coaxing or force feeding.
This approach may make a child reluctant to eat.
Mealtimes are sometimes feared rather than being
enjoyed.
Assessment of feeding may help to identify difficulties
and suggest various management options.
The specialist assessment team may
consist of:
Dietitian – will be involved in making an assessment
of the types and amounts of food eaten via a food diary
and assessments of growth chart measurements.
This involves measuring weight and height and plotting
these measurements on a growth chart. Height
can be difficult to accurately obtain due to being wheelchair
dependent or having limitations of joint range in
the ankles or a curvature of the spine. There are other
ways to estimate height eg by taking demi arm span
measurements. Midarm circumference can also be
a useful measurement if weight or height cannot be
obtained. Repeated measurements over time are essential
to look at change over time and assess growth.
A diet history or food diary can give information about
types, quantity and textures of food eaten. This also
gives an indication of how balanced the diet is and
which nutrients may be missing. Good growth is an
indication of good nutrition. The dietician is able to give
advice on how to alter nutrients in the diet and also
advise on alternative forms of feeding.
Speech and Language Therapist – will take a
feeding history and look at how the muscles of the
tongue, lips and throat are working. In addition s/he
will look at any other problems that may affect chewing
eg, with teeth. The safety of swallowing and if there
are any risks of food or drink going down the wrong
way (aspiration) needs to be assessed to enable safe
management. The doctors and speech therapist will
evaluate if this needs to be assessed in more detail.
A videofluoroscopy, which is an X-ray of swallowing,
may be done to look closely at how food is chewed
and swallowed.
Doctors/Gastroenterologist – may investigate
gastro-oesophageal reflux by doing a pH study or barium
meal.
Psychologist – may help with some of the social or
emotional problems for the child and family that may
result from eating and drinking difficulties.
Occupational Therapist/Physiotherapist – may
make suggestions on seating and positioning or any
cutlery or equipment that may make eating easier.
15

Health
Management
• Safe swallowing advice
This is often the fi rst line of management after assessment.
It aims to reduce the risk of aspiration.
It may include advice to: sit upright after meals to
prevent residues of food in the throat going down the
wrong way or not to wash food that gets stuck down
with liquids but rather to encourage dry swallowing
after mealtimes. This can help to clear the throat of
residue rather than introducing more which can then
be aspirated. Sometimes there is desensitisation to
residue so a child may need reminding to dry swallow/swallow
saliva after mealtimes as they can’t feel
the residue there anymore. Keeping mealtimes short
(20-30 mins) can help reduce the risk of muscles
getting tired and food going down the wrong way.
.• Food texture modification
Food consistencies can be altered to make them
easier to manage eg, mashed or chopped. Sauces
can be added to make things easier to swallow. Liquids
can be thickened so they move more slowly
through the throat and don’t go down the wrong way.
There are a variety of teats, bottles, cups and straws
which may make eating easier. It is best to discuss
their use with your therapist to help fi nd the best solution
for a problem.
• Oral motor exercises
We are not aware of specifi c exercises that can
strengthen the feeding muscles of children who have
a muscle disease. Any exercise however will not induce
harm, but it is important to monitor whether it
is benefi cial.
• Oral hygiene
It is helpful for everyone to regularly brush their teeth
and visit a dentist for removal of plaque or treatment
of cavities if required. This will help keep the mouths
clean and healthy. If saliva is full of food residues
or bacteria, and goes down the wrong way, a chest
infection may quickly develop.
• Diet therapy to maintain adequate growth
The aim is to prevent weight loss and maintain a suitable
level of growth. There are a number of steps in
treatment which you are likely to progress through
until growth is satisfactory. Their use and effect on
growth should be monitored regularly.
Altering the diet
This is done by increasing the frequency and amount
of food eaten: eg encouraging in-between meal snacks
(i.e., eating “little and often”) and having a pudding after
meals. Or by increasing the density of nutrients in
the diet. For example: eating high calorie and high protein
foods (eg peanut butter, fromage frais, chocolate
16
spread), enriching foods by adding protein powders
(eg skimmed milk powder) or adding fats and oils to
foods (eg double cream in yoghurt, cheese in sauces).
Prescribed dietary supplements
(usually prescribed by your GP following advice from
a dietitian)
These can be special fat emulsions or carbohydrate
supplements which are added to high protein foods or
ready-to-drink high-calorie drinks which are almost nutritionally
complete. They are either fruit or milk-based,
or other high calorie powders added to milk.
Supplements are easy and convenient to use. They
are particularly useful if eating enough food is diffi cult.
However, there are only a limited number of fl avours
available and this may lead to becoming fed-up with
the taste over time.
Tube feeding
Nutrition can be put directly into the stomach by tube.
Giving extra nutrition by tube can relieve the pressure
at mealtimes when trying to eat and drink enough and
can help a child to gain weight and grow. For individuals
with swallowing diffi culties it can protect the airway
from aspiration by putting the food/liquids straight into
the stomach, avoiding swallowing. There are two different
ways of tube feeding:
1) Nasogastric feeding (NGT) is recommended for a
child who needs short term tube feeding (4-6 weeks).
A nasogastric tube passes up the nose down the throat
and into the stomach. Usually this is not an acceptable
solution for long term use, although sometime it can be
well tolerated. The advantages of nasogastric feeding
are that it can provide extra nutrition during times of
acute illness and therefore aid recovery. Disadvantages
are that the tube can cause a sore nose, ulceration
and irritation of the throat or food-pipe. Refl ux can get
worse as the muscle at the top of the stomach can’t
close tightly with the tube in place. The tube can move
and come out of the stomach. If an individual is tubefed
when the tube is not in the stomach it can cause
problems. A nasogastric tube is also very visible and
its purpose can be misunderstood by other people.
2) Feeding via a gastrostomy tube, that goes directly
into the stomach, is the most successful option for longer
term tube feeding. See the Muscular Dystrophy
Campaign Gastrostomy fact sheet for further information.
With thanks to staff and patients from the Paediatric
Neuromuscular Team at the Hammersmith Hospitals
NHS Trust for their support and help in producing this
fact sheet.
Article online at: http://www.muscular-dystrophy.
org/assets/0002/2947/Nutrition_and_feeding.pdf

First National Battery
Division of Metindustrial (Pty) Ltd
Tel: 011 741-3600/3780
Fax: 011 421-2642
Cell: 083 294 0166
Email: robinm@battery.co.za
Physical address: 64 Liverpool Road,
Industrial Sites, Benoni South, 1501
CARE GIVERS SA
We Care
Professional, Caring, Competent
Carers / Short or Long Term /
Reasonable Rates
Contact person: Marli
Tel: 011 462-6478
Cell: 076 011 5893
Email: caregivers.sa@vodamail.co.za
The Muscular Dystrophy Foundation of SA
would like to thank the National Lotteries
Board for their continued support.
DCC half page - MDA FA 11/25/14 7:57 PM Page 1
C M Y CM MY CY CMY K
17

Disability
AND
REBATES
The basic procedure is that you need to decide what
vehicle and what adaptations you require, get quotations
for the vehicle and the adaptations, and write a
motivation explaining why you have chosen that vehicle.
You then need to prove that you have a disability,
and this will involve being evaluated by a panel.
Once you have all this paperwork in place, NCPPDSA
will send you an application to ITAC/DTI for processing.
It usually takes approximately six weeks to get the
certifi cate. Only once you have received the certifi cate
may you sign to purchase the vehicle. The vehicle may
not be in the country before you have the rebate certifi
cate.
Claiming the costs of vehicle
adaptations from tax
Any expenses that you have had as a result of your
disability can be claimed against tax. This includes
the cost of hand controls or any other adaptation that
you have made to your vehicle to accommodate your
disability. Unfortunately SARS does not seem to allow
you to claim the additional costs of a bigger or more
expensive vehicle that you may need to buy for transporting
a wheelchair.
IMPORTANT REBATE:
• Any person with a physical disability that is severe
enough to require adaptations to enable them to
drive the vehicle or to be transported in it qualifi es
for either a rebate on customs duties if they buy an
imported vehicle, or the ad valorem excise duty if it
is a locally manufactured car.
• On imported vehicles this works out to approximately
15% of the retail price of a new vehicle.
• No left-hand drive vehicle may be imported.
• No vehicle may be ordered before the import permit
has been obtained from DTI, otherwise no rebate will
be granted.
• No rebates will be issued on commercial vehicles for
individual use.
• An individual may apply for a rebate only every fi ve
years.
Applying for the rebate:
The rebate applications are processed by the National
Council for Persons with Disabilities. The contact person
is Edwina Ludick on 011 452 2774 or at nationaloffi
ce@ncppdsa.org.za.
All the relevant information and application forms are
available on the website at www.ncppdsa.org.za under
‘What We Do’ and then ‘Vehicle Rebates’. A step-bystep
guide is also available at www.rollingrehab.wozaonline.co.za.
Does the rebate apply to second-hand vehicles?
Yes, but only if you are importing it yourself. If the vehicle
is already in the country then you no longer qualify
to get the rebate on the import duty.
There are four different types of permits available:
a. Imported vehicles to be driven solely by a person
with a physical disability (customs duty payable)
b. Locally made vehicles to be driven solely by a
person with a physical disability (ad valorem excise
duty payable)
c. Imported vehicles for transporting persons with
physical disabilities (customs duty payable)
d. Locally made vehicles for transporting persons with
physical disabilities (ad valorem excise duty
payable)
Guide to applying for the rebate
Step one:
Investigate the vehicle market and decide what vehicle
you would like to buy, and why. At this stage DO NOT
place an order for the vehicle.
Step two:
Get a written quotation and description of the adaptations
that you will be fi tting.
Step three:
Gather relevant application forms and complete
the following:
1. DTI application form according to the type of permit
required – available from www.ncppdsa.org.za.
2. Motivation letter – give a detailed description of
the vehicle, your disability and why you chose
that vehicle.
3. Medical report – this must be completed by your
doctor.
Step four:
Complete the abovementioned forms and collect
the following:
1. Copy of your driver’s licence. For fi rst-time car
buyers who do not yet have a licence, a learner’s
licence is adequate.
2. Quotation from the company/individual that will
do the adaptation.
3. Copy of your ID document.
4. Motor manufacturer’s specifi cation brochure.
18

5. Homologation certifi cate (available from the dealer)
– this is the South African Bureau of Standards
(SABS) approval of the vehicle for SA roads. If the
vehicle is imported directly by a person with physical
disability, SABS must be contacted to obtain a
letter of authority (LOA). For a second-hand imported
vehicle, a letter of inspection from the seller
must be given to the SABS in order to get the LOA.
This application has a cost involved.
6. Declaration of nominated driver(s), registered
owners or organisations – this is only for vehicles
that are going to be used for transporting persons
with physical disabilities.
Step five:
Contact your nearest NCPPDSA offi ce and make an
appointment to see a panel of adjudicators. The panel
report must be included with your application.
Step six:
Hand in all your paperwork –the original forms are required.
This can either be handed in at the offi ce that
did your panel report or can be couriered or sent by
registered mail to:
The National Council for Persons with Physical Disabilities
(NCPPDSA), Private Bag X10041, Eastleigh,
Edenvale, 1610 or 82 Andries Pretorius Road,
Eastleigh, Edenvale.
They will evaluate whether your claim is valid, then
write a report supporting your application and submit
the forms to the DTI.
Disability
Step seven:
The process can take up to approximately six weeks
to complete (this depends on which part of the country
you are in). You will be contacted by the DTI and
they will make the necessary arrangements with you
to have it collected, mailed or couriered to you. If you
have not received your permit from the DTI in this time,
contact Mr Isaac Fenyane on 012 394 3738.
Step eight:
With your permit in your hand, you may now place an
order for your new vehicle. It is very important that the
date on the permit is before the customs date; if it is
not, then your permit will be invalid and no rebate will
be applicable.
Step nine:
Most companies will organise to have the adaptations
done before you take ownership of the vehicle. However,
you may choose to organise this yourself.
Step ten:
Once all the adaptations have been completed, either
the dealer or the client must take the vehicle to customs
to have it cleared. Again an appointment must
be made for this. A copy of the sign-off letter must be
given to the dealer. Check out the SARS website at
www.sars.gov.za to fi nd your nearest customs offi ce –
under ‘Quick Contacts’ click on ‘Customs and Border
Posts’, then ‘Harbours and Internal Offi ces’.
WHEELCHAIR PARKING
The amended Regulation 305 of the Road Traffic Act
states as follows:
“No person other than a disabled person or a driver of a
motor vehicle conveying disabled persons, which motor
vehicle is issued with a sticker for conveying disabled
persons, shall park in a parking bay reserved for disabled
persons.”
The current system is that any person with a disability
who requires a parking disc must go to their local police
station or licensing department and hand in a doctor’s
letter stating that they have a disability, and once they
have completed the relevant documents they will be
issued with a parking disc. However, the legislation is
different for each municipality, and the discs are valid
only in the municipality that issues it.
Parking stickers are also available through some
disability organisations such as:
QASA 0860 ROLLING
0860 765 5464
info@qasa.co.za
APD 011 646 8331
info@apdjhb.co.za
19

Disability
SARS – TAX
The following four articles, slightly adapted, are by
the disability tax specialist, Jaco Kruger.
BENEFITS FOR PARENTS AND
TAXPAYERS MAKING USE OF
THE DISABILITY DEDUCTIONS
There seems to be an enormous number of uneducated
taxpayers and parents when it comes to the benefits
of making use of a tax practitioner specialising in disability
deductions. Hence, creating awareness amongst
the various groups and/or foundations in South Africa is
of the utmost importance. Every day I come across parents
and disabled taxpayers who are either not aware
of such deductions allowable by SARS or are not sure
how to effectively apply the set guidelines.
There is also a bit of work when setting up the taxpayer’s
disability schedule and working papers with the correct
references, especially when we go back and do corrections
to prior years. But this will make it a lot easier to
assist the taxpayer and the tax practitioner when doing
future claims.
Some taxpayers who have had successful claims have
invested the monies received into the improvement
of the lifestyles of their loved ones who are disabled,
apart from using this as a recovery of costs already
spent in this regard. Recoverable amounts from over
R30,000 are common and in some cases are well over
R100,000. Take into consideration that this was money
they never would have had!
The free consultation offered by my practice assists
with the maximisation of the benefits for the taxpayer in
terms of such claims. It virtually brings the tax law and
the disabled environment closer to one another. Going
out to clients and experiencing the disability first hand
is what it is all about. This is where noticeable clues are
gathered, so as to assist the taxpayer the best.
Being a parent of a disabled child makes this process
a lot easier for me, as empathy rather than sympathy is
experienced throughout the process. I urge all taxpayers
to make use of the allowable benefits from SARS
and to seek the services of a specialist on disability tax,
to ensure a smooth transition and high success rate.
EFFECTIVENESS OF THE
CURRENT RULES BY SARS
FOR DISABILITY DEDUCTIONS
The current guidelines by SARS have improved the
lifestyle of the disabled person in South Africa since
the last amendments in March 2012. One of the major
changes was the split of the physical impairment category
(code 4022) and the permanent disability category
(code 4023). This has an impact on the level of deductions
as the physical impairment code has a ceiling of
7,5% on taxable income, whereas the total permanent
disability deduction is allowed and deductible from taxable
income.
But still, there is a lot of work to be done. One of the major
contentious areas is that of the methodology around
the calculation of the taxable income, when a disability
expense is deducted. In simple terms it means that the
larger your tax rate, the more you will benefit from your
disability deduction. Hence the shortfall for taxpayers
who have a low income and respective low tax rate but
have large costs on disability. Therefore it will not benefit
them as much as the taxpayer with the higher tax
rate and higher income. Looking at it in another way,
the type of disability or cost is not aligned with the taxpayer’s
tax status.
This brings up another area of concern in that those
who do not pay tax and have a disability cannot claim.
From what I gather, this is a rather substantial portion
of some poor communities, especially in areas like the
East Rand.
I think the abovementioned areas will need to be relooked
at going forward.
20

EMPLOYER TAX BENEFITS –
LEARNERSHIP AGREEMENTS
(DISABILITY)
• Tax Act Section 12H – This provides for a deduction
to an employer, in addition to any other deductions
allowable under the Act, for any registered learnership
agreement if all the requirements referred to in
section 12H are met.
• In some cases more than one employer may be a
party to a registered learnership agreement. In such
event, only the “lead employer” (in practice, the
lead employer will usually be the employer that pays
the learner’s remuneration) identified in the learnership
agreement may claim under section 12H.
• Two types of allowances are allowed:
► Annual/commencement allowance –
Entitlement is measured by the existence of the
learnership agreement, in any year of assessment
(section 12H(2)). The amount allowed is R50,000
and is pro rata applied, if the agreement is
terminated within the year.
► Completion allowance – Entitlement here is
measured upon the learner successfully
completing the learnership in any year of
assessment. The amount allowed is R50,000.
• Registered learnership agreement as defined in
section 12H(1) comprises:
► An agreement registered in accordance with the
Skills Development Act, 1998 and entered into between
the learner and the employer before 1 October
2011, or
► A contract of apprenticeship entered into before 1
October 2011, registered with the Department of
Labour under section 18 of the Manpower Training
Act, 1981, if the minimum period before undergoing a
trade test is more than 12 months.
► Note – The Minister of Finance has extended the
learnership agreements for an additional 5 years.
• Requirements for the deduction of the annual
allowance
► The learner must be party to a registered
learnership agreement with the employer.
► The agreement must have been entered into
pursuant to a trade carried on by that employer.
► The employer must have derived “income” as
defined in section 1 from that trade.
• Requirements for the deduction of the completion
allowance
► The learner must be party to a registered
learnership agreement with the employer.
► The agreement must have been entered into
pursuant to a trade carried on by that employer.
► The employer must have derived “income” as
defined in section 1 from that trade.
Disability
THE ROLE OF THE DISABILITY
TAX SPECIALIST
In the last year I have come to realise just how big the
need is out there when it comes to assisting taxpayers
with disabilities and/or taxpayers who have dependants
with disabilities. Spending time with these individuals
and understanding the extent of the disability is
of the utmost importance. This enables one to bridge
the gap between the guidelines set out by SARS and
the understanding of the disability in terms of what can
be claimed and what not.
Communicating with SARS at the correct level and
speaking the correct language, so to speak, plays a
pivotal role in determining the final outcome of the
results of taxpayers’ tax return submissions. Furthermore,
details from working papers to adequate references
are of major importance. This results in successful
submissions, contributing to improving the lifestyle
of the disabled person.
Hence I believe this section of individual tax to be of
a specialised nature, where due care of the individual
situation is of high importance. I have had numerous
taxpayers requesting assistance where they themselves
had thought this process would be very easy
but only got themselves into a very unhappy position.
The reasons ranged from incorrect procedures followed
to incomplete documentation, to mention only
two. This sometimes means that you will
wait a long time for your refund. It is
ultimately the lack of understanding
of the guidelines written by SARS,
together with the incorrect use
of the SARS e-filing system,
that creates the majority of the
problems for the taxpayers doing
this on their own.
In my opinion the disability tax
specialist has a vital role to play
to ensure that the benefits to the
disabled person are maximised
and hence lead to the improvement
of the living conditions of the disabled.
The articles above are available
online at http://www.jacokrugerafs.co.za/tax-library.
html.
For more information, please contact Jaco Kruger on
083 636 9991 or at jaco@accfinser.com. You can also
visit his website at www.jacokrugerafs.co.za.
21

Recipes
Chicken and
casserole
Mixed root
vegetable soup
Deliciously comforting.
3 Tbsp (45ml) olive oil
1 onion, chopped
3 garlic cloves, crushed
2 leeks, washed well and finely
sliced
2 large carrots, peeled and sliced
1 celeriac, peeled and chopped
1 kohlrabi, trimmed, peeled and
diced
4 turnips, peeled and diced
2 potatoes, peeled and diced
1 sweet potato, peeled and diced
6 cups (1.5L) chicken stock or vegetable
stock
5cm knob ginger, peeled and sliced
1 bouquet garni (tie 2 sprigs thyme,
3 sprigs parsley and a bay leaf together)
8–10 peppercorns
22
Serves 4-6
Heat oil over medium heat and sauté
onion, garlic and leeks until tender.
Add carrots, celeriac, kohlrabi, turnips
and potatoes, and fry for a few
minutes.
Add stock, ginger, bouquet garni
and peppercorns, and simmer until
cooked through, about 30 minutes.
Blend soup until smooth, adjust seasoning
and serve with hot buttered
toast.
2 Tbsp (30ml) olive oil
2 onions, chopped
3–4 celery sticks, chopped
2–3 carrots, peeled and chopped
2 Tbsp (30ml) chopped oregano
6 chicken thighs, skin removed
2 bay leaves
1 can (400g) PnP butterbeans,
drained and rinsed
1 (100g) chorizo sausage, sliced
2–3 garlic cloves, crushed
2 Tbsp (30ml) smoked paprika
1 can (400g) chopped plum tomatoes
1½ cup (375ml) chicken stock
Salt and milled pepper
3 Tbsp (45ml) chopped parsley
Fresh Living recipes. Recipes and images are
courtesy of Fresh Living magazine. Magazines
are on sale at Pick n Pay stores countrywide.

utterbean
Recipes
Olive oil chocolate
mousse with spiced pecans
A healthy winter feast
for family and friends
Serves 4-6
Preheat oven to 180°C.
Heat oil in a large saucepan and
sauté onion, celery, carrots and
oregano until tender.
Add chicken and fry to seal on both
sides.
Add bay leaves, butterbeans, chorizo,
garlic, paprika, tomatoes, stock
and seasoning.
Bake for 30–40 minutes or until
cooked through.
Mousse:
2½ slabs (200g) dark chocolate
Pinch of salt
½ cup (125ml) extra virgin olive oil
4 extra-large egg yolks
2 extra-large egg whites
⅓ cup (80ml) castor sugar
1 tsp (5ml) vanilla extract
2 Tbsp (30ml) espresso or strong
coffee
2 Tbsp (30ml) brandy or whisky (optional)
Pecans:
1 packet (100g) PnP raw pecans
¼ cup (60ml) icing sugar
1 tsp (5ml) PnP chilli flakes
½ tsp (3ml) cinnamon
Pinch salt flakes
Preheat oven to 180°C.
A topic of conversation at your
next dinner party!
Whisk egg yolks and half the sugar
until pale and fluffy.
Fold chocolate mixture, vanilla, coffee
and alcohol through egg yolk
mixture.
Whisk egg whites with remaining
sugar until glossy. Fold through
chocolate mixture.
Spoon into glasses and refrigerate
to set.
Toss pecans with remaining ingredients
on a paper-lined baking tray
and roast for 5-6 minutes until golden
and slightly caramelised.
Cool, crumble slightly and scatter
over mousse.
Serve scattered with parsley.
Melt chocolate and salt in a bowl
over boiling water. Add oil in a steady
stream, mixing until well combined.
An option: Replace olive oil with an
equal amount of cream if you prefer.
23

Events
The theme is … SPRING INTO ACTION!
Casual Day
4 September 2015
Casual Day coincides with the first week of Spring 2015. There’s a sweet smell in the air, the
sounds of the birds, and hints of warm summer to come. It’s a time of rebirth, of new beginnings.
We have woken up from our winter grind with opportunities sprouting all around us.
It’s on this day that the Casual Day community takes time out to celebrate persons with disabilities
and to make sure that we are all one big family. The creativity is bursting out all over and
we are dressing up or down in our Casual Day outfits.
Take your inspiration from the birds and the bees, the skies of blue, the colours of the rainbow,
the blossoms on the trees and the minty hue of new leaves. The colour for the year is refreshing,
zingy mint.
This year five different collector’s item stickers will be produced, each with a different image, so
collect all of them, wear the whole bunch! Thank you to you all for your ongoing support. Spring
into Action for persons with disabilities in 2015! Celebrating 21 exciting years of service to you.
To earn the right to dress up this way, participants make a donation of R10 for the official Casual
Day sticker. Not only does Casual Day raise funds, it also raises awareness of opportunities
for full inclusion of persons with disabilities into the community. Casual Day stickers can be
obtained from Muscular Dystrophy Foundation offices.
2J HARMONIX DISABLES CASUAL DAY MIC
All eyes at the Gallagher Convention
Centre in Midrand were on 2J
Harmonix as he rapped Dreamer featuring
LML, the first track on his fifth
new EP, Motivation.
Casual Day ambassador 2J Harmonix
before rolling up on stage for his
Casual Day performance
His live performance was the only one
at Casual Day’s Show & Tell event on
March 6, which doubled for Harmonix
as his official album launch party.
24
Pictured: Zaza Khazamula &
2J Harmonix - photo’s courtesy of
Mooketsi Nthite.

Events
From left to right: Casual Day
ambassador Khumo Moyane,
2J’s publicist Mooketsi Nthite
and his manager Angela Lewis
force-feeding Mooketsi the Motivation
album
Show & Tell is a ceremony where
the most notable persons with disabilities
as well as able bodied persons
and corporations are awarded
trophies and certificates for advancing
awareness of people with
disabilities and raising money for
SA’s disabled community. Harmonix
had this to say after the heartwarming
response he received for
performing Dreamer.
“I’d just like to say thank you to the organisers for giving me this honour.
This is quite a new experience because I’m never the only performer so I
felt really important.”
Award-winning radio and television journalist David O’ Sullivan, who was emceeing the event,
described it as a “wonderful” performance, while people like Zaza Khazamula, Beneficiary
Liaison Manager for Casual Day, copped Motivation, which was on sale for R100, an album
Harmonix describes as unconventional rap with motivational lyrics.
The event itself was a brilliant success,
and the hall was packed
with about 600 people, some of
whom were quietly debating how
much Casual Day had raised that
year. The suspense finally ended
when organisers announced the
jaw-dropping amount had raised in
2014.
Harmonix is now preparing for upcoming
motivational talks, TV appearances
and rap performances.
Motivation can be purchased for
R100 by ordering online at 2jharmonix@gmail.com.
The album will
be delivered to your doorstep, and
20% of the money will go to Casual
Day and the Muscular Dystrophy
Foundation of South Africa.
Pictured: 2J Harmonix, Nicole
Paxton, Mr South Africa,
Armand du Plessis and
Khumo Moyane.
25

Events
Pictured: Dr Gregory Duddy, Dr Estelle Gouws, Dr Marius Coetzee, Dr Leon van der Merwe
Muscle Riders
Ride For A Purpose (ride for those who can’t)
This is the fourth year that we will participate in the Momentum 947 Cycle Challenge. The cycle challenge
will take place on Sunday, 15 November 2015.
Our Muscle Riders group are a group of cyclists who care for people suffering from muscular dystrophy
and want to make a difference in the lives of those less fortunate than themselves. Cycling 95 kms is a
challenge, but riding for those who can’t makes it all worth it.
Please ask family and friends who cycle to ride for us. It would be great to get more riders who can help
generate more awareness and much-needed funds so that we can give our members the assistance they
need. Thanks to everyone who rode for us last year and is supporting us again this year.
If you are unable to ride for us, you are welcome to make a donation to our
worthy cause.
Banking details are as follows:
Muscular Dystrophy Foundation Gauteng
Nedbank
Branch Code: 192841
Account Number: 1958 323 284
Reference: Muscle Riders and your name.
We can issue you with a section 18(a) tax certificate for tax purposes.
Please visit our Muscle Riders website: www.muscleriders.co.za. Click on the
YouTube icon on the right and watch our Muscle Riders video Live Life to the Fullest (For Them I Cycle).
Facebook page: www.facebook.com/mdfgautengcycle
Should you be interested in riding for us or helping us to make this project a success, please let us know
so that we can provide you with further information.
26

Body Change
It’s all about fun and supporting
a good cause
By Farrell Kurensky
Please go and have a look at the Muscular Dystrophy Foundation’s
website and see the great work they are doing. Watch their Muscle
Riders videos and like their page. Look at the pictures and see what we
are doing this for. It will change your opinion of charity and community.
I am currently studying for my Bachelor of Arts Degree in Anthropology
and International Relations; and am a coach at St Stithians Preparatory.
What I and my friends have decided to do is improve our bodies and our
minds the healthy way in order to show our appreciation to those who
do not have the chance to do the same. We have decided to become
involved with the Muscular Dystrophy Foundation Gauteng to make the
public more aware of the disease and generate funds for those in need
of aids to improve their quality of life. We see it as only fitting that we
use what has been so unfortunately taken away from people with disabilities
to make what will hopefully be a world of difference. We are
going to use our bodies and your spirit to hopefully improve the lives of
people with muscular dystrophy.
Events
Greg Pepper is a willing participant who is involved and is inspired to help charity
and is both growing his hair and cycling to raise as much money as he can for the
Muscular Dystrophy Foundation Gauteng. Greg is growing his hair much to the
dislike of his mother, who cannot wait to shave his hair.
This is Rudi Parry and that hair is looking rather intense.
His way of raising money is extremely clever
in that for every run he scores in cricket his sponsors
will donate a certain amount. Thanks my boy. It’s much
appreciated. I might even bid on cutting your hair at
the end. Rudi never lets a challenge beat him and thus
when I challenged him to this, his words were “I’ll challenge
you buddy and I’ll raise more money than you”.
The jury is out on that one.
Stefan Bosch working hard in the gym with a different
smile on his face. Stefan is a professional
photographer and started working out last year. His
words to me were that in the beginning it was all about self-image, stopping
smoking and getting in the gym to feel better about himself. However, now his
motivation has changed in that he wants to work hard every day for a great
cause – one that he is proud of and one that the people affected with MD inspire
him to do more.
How this is going to work is that I and whoever does this with me will post each
month the progress they make. I will also be doing an event in December to
raise even more money. I will let everyone know how else we will be raising
money throughout the year. If you are interested in doing crazy things with us,
please contact MDF Gauteng.
Please join us in doing things that some of us take for granted – walk, run,
cycle, gym, etc. for those who can’t.
27

People
Philip Hojgaard-
Olsen
Philip Hojgaard-Olsen is a 16-year-old boy with DMD.
Despite his condition he has quite a long list of achievements.
He is currently pursuing his Duke of Edinburgh “Silver”
Award, for which his goal is to sail a set course. He has
already mastered sailing solo, which he does with the
help of a joystick that controls both sail and rudder. To
date he has won two regattas.
He is on the board of Social Inc., which is an organisation
that aims to make life easier at school for children
with disabilities by educating their schoolmates on how
to interact with students who have a disability.
He is also ambassador for the Duke of Edinburgh programme
through the Australian Muscular Dystrophy
Association.
On three occasions Philip has been involved in the
Schools Spectacular, a huge annual televised event,
where approximately 3 000 school students come together
from near and far to perform at the Sydney Entertainment
Centre.
Last May Philip and his Dad won the annual ICT
(Italian Connection Trophy), a rally, with Peter as driver
and Philip as navigator. It is a rally in which you need
to use your navigational skills to get from A to B and
answer tricky questions along the way.
Philip is also involved in boccia, and last year his school
won the national championship.
Philip Hojgaard-Olsen & Prince Edward
Mum and Dad decided to have a short holiday and experience
the “Ghan”, a famous train ride from Adelaide
to Darwin. Little did we know that on this train we were
to meet a lovely South African couple, Patrick Dillon
and Yvonne Phillips. During one of our conversations
they asked us if we had ever considered going on a
safari in South Africa. Had we ever! This had for a while
been a burning wish, but having a 16-year-old son with
DMD did complicate things a fair bit. How do you trust
any travel agency to provide for his needs, and what if
anything were to go wrong?
However, Patrick very soon convinced us that he would
take care of all the planning, and all we had to do was
meet up in Johannesburg. Wow, what more could you
ask for.
28

We arrived in Johannesburg on June 20th and were
met by Patrick and Yvonne at the airport. They had
rented a ten-seater bus (we were fi ve Aussies) and we
brought a special car seat for Philip, so he could sit in
the front seat and have the best view. We spent three
days seeing attractions around Johannesburg and then
set off for our safari trip in Kruger National Park.
People
All the lodges we stayed in had wheelchair access and
everything worked like clockwork. We were so well
looked after, and not only that but Patrick and Yvonne
turned out to be fantastic tour guides with an incredible
knowledge that they were able share. We got to see
lots and lots of amazing animals and were blown away
by the incredibly scenery.
Philip (as did the rest of us) had a truly unforgettable
holiday, and the kids adopted South African Gogo and
Oupa, and everyone is determined to go back for
another adventure, provided of course we can get
the same fantastic tour guides.
Links:
http://www.socialinc.org.au/
http://mdnsw.org.au/
http://www.youtube.com/watch?v=1hhmZmy7dQk
Raees Swartz
Raees means Leader, Chief, Captain, Prince,
Nobleman.
He was born on the 16th September 2005 at Dora
Nginza Hospital. He is 9 years old and attends
school at Northern Lights. He lives in a Muslim
household in Salt Lake, Port Elizabeth.
Raees enjoys swimming, going to the park, playing
arcade games and a PlayStation. He is a car fanatic,
in fact when asked what he wants to be when he
grows up he said “A car”.
He is a very happy child with a huge family support structure. He has a sister and
a brother whom he adores and is very protective of.
Raees is a bright spark, brilliant at instigating fun and games. He enjoys
interacting but takes long to warm up to new people. He is strong minded
and strong willed; if Raees doesn’t want to do something then “it ain’t
going to happen”.
He was diagnosed with Duchenne Muscular Dystrophy in 2010. He has
recently started using a wheelchair.
Quotes
Challenges are what make life interesting and overcoming them is what
makes life meaningful. – Joshua J Marine
Believe you can and you’re halfway there. – Theodore Roosevelt
If you want to lift yourself up, lift up someone else. – Booker T Washington

People
Jonathan “2J Harmonix” Groenewald was diagnosed with muscular dystrophy at the age of 2. Doctors told his
parents he would not live past the age of 4, but he defi ed the odds, and is now 31 years old and carving out a
career for himself as a rapper. Born and raised in Rustenburg, where he pioneered the area’s hip-hop movement,
he is now resident in Eersterust, Pretoria.
He grew up an introvert and had few friends, but as a teenager he began to jot down his emotions in the form of
aggressively charged rap lyrics and poetry – this was a way for him to let go of his negative views on life, he says.
His outlet became his passion, which meant he could break out of his shell and publicly express himself at poetry
sessions and corner ciphers.
By the time he fi nished high school his condition had caused him to lose mobility and he could not even hold a pen
anymore. But that did not stop him from making headway in the very competitive world of hip-hop.
He was a member of the group Power of the Taurus. Now known as 2J Harmonix, he is famed for his thoughtprovoking
lyricism and clever wordplay. He has many accolades to his name, including his ranking as Number
Four at the Urban Soul Poetry Slam in March 2009 and a performance at the Eersterust Idols in 2011. He has had
two Number One hits on Radio Mafi sa.
He has a recognisable voice with identifi able style. Besides
being an avid hip-hop head, he’s also an activist for muscular
dystrophy and youth development, particularly in Coloured
communities.
He says the biggest challenge for him has been “self-acceptance”.
Today his music carries a positive message, highlighting
the bittersweet nature of an artist with a disability
and the human instinct to overcome adversity. “I’m unstoppable,”
he says, despite not having the use of his body or
even his hands. His goal is that the world will hear his story
and be motivated to never give up. “If the sky is the limit,
the sun better give me space,” he quips.
In 2013 Jonathan was appointed as a Casual Day ambassador.
Jonathan, life is how you live it and yours is an
inspiration to us all, whether we are physically
challenged or not. Ed.
30
Jonathan Groenewald
aka
2J Harmonix

Living with
Spinal Muscular
Atrophy
My name is Stéphane Tijs. I am 35 years old and I live in
Arnhem, a city in the east of the Netherlands. I was diagnosed
with spinal muscular atrophy type 2 when I was a
baby. Even though SMA has had a huge impact on my
life, it hasn’t kept me from achieving certain goals in life.
My strong determination and positive character have always
inspired me to try to do as much as I could, from
sports such as wheelchair hockey to different university
studies. I believe that it is important to surround yourself
with people, either family or friends. My big secret
to growing up with a muscle disease is to live like everybody
else and to strive to reach your goals in life!
People
Nowadays, I try to spend my days focusing on tive activities. For instance, I enjoy doing charity work for
producorganisations
that focus on advising the local community.
In addition, I am part of a workgroup that advocates the
interests of people with SMA. This work group is linked to
a Dutch muscle disease union (Spierziekten Nederland).
My own experiences as a person with SMA and my drive
to participate have motivated me to set up Miles for Muscles,
my own foundation for SMA in the Netherlands. Miles
for Muscles was established in 2014 and aims to fi nance
research and promote life improvements for people with
SMA. We organise charity events and give presentations
at elementary schools. My vision is that from an early age
on, whether you are diagnosed with a disease or not, it
doesn’t matter, all you need is a little help to move towards
achieving your goals. Let’s face it, most people are faced
with a ‘disability’ of some kind, whether it is a congenital
affection or something else like low self-esteem. Everyone
is challenged with some form ‘disability’. That’s why I think
our presentations are accessible for everyone, irrespective
of ages.
Of course life isn’t only work, and in my spare time I like to
spend time with friends and family, go to movies and festivals,
and travel. Two years ago I made a road trip from my
hometown in the Netherlands to Russia and back. It was an
8 500 km trip that took three weeks. It was an unforgettable
journey that I will cherish for the rest of my life!! At the moment
I am making plans for a new trip, and guess where
to!? To South Africa!! My goal is to make this trip in January/
February of 2016. Although initially the trip was going to be
for pleasure, I came up with an idea to make it work related.
How? Well, while making plans for my trip, I discovered that
the vans they rent out either are too low for my wheelchair or
are not rented out without a chauffeur. So I came up with the
idea of shipping a van from the Netherlands to South Africa.
In this I saw a wonderful opportunity to be able to give back
to MDSA Gauteng and the MD community. I am working on
a plan to raise funds for the van through charity, and after
my vacation I want to donate the van to MDSA. I realise that
this is a tough challenge but it is not impossible! Given my
determination to give back to the community, this would be a
wonderful conclusion to my vacation!
31

Sport
Special Olympics South Africa
What is divisioning?
By Igna Steyn
Special Olympics South Africa offers year-round sports training and competition opportunities in 17 different
sports codes to more than 4 200 children and adults with intellectual disabilities in South Africa.
Participation in training is open to anyone older than 2 years, and they may take part in competitions
when older than 8 years.
The question that is often asked is: With so many athletes with intellectual disabilities, how do you provide
fair competitions and keep athletes interested?
Special Olympics uses a process called divisioning to place athletes in groups of up to eight for competition
purposes.
Athletes during divisioning at
the Special Olympics South
Africa National Games in July
2014. It is clear that athletes are
spread across the track. The last
one will never stand a chance
without divisioning.
Everybody deserves a fair opportunity to participate in a competition. If an athlete is always easily
beaten by other athletes, will he or she be motivated to continue training and trying his or her best?
I don’t think so…
The process of divisioning is done in order to divide athletes for a specifi c event according to different
levels of ability. If an athlete is placed in a group of athletes to compete in an event and they are all on
the same level of ability (a guideline of 10% variance is suggested), everybody in that group stands a fair
chance to win. I am sure any athlete will be motivated to train hard if they know at the next competition
they stand a chance of winning.
Although the Special Olympics Athlete Oath states “Let me win, but if I cannot let me be brave in the
attempt”, winning is not the focal point in Special Olympics – participation is. With 4 200 athletes registered,
this makes much more sense.
To accommodate all our athletes in fair competitions, it is not unusual to have, for example, more than
one 100m race for females in the ‘under 21’ age category. If there are, say, 20 athletes entered for the
specifi c race, they will fi rst run a 100m to get their times, and according to those times they will be placed
in groups (maximum eight and minimum three) on the same ability level. This may result in three to four
32

Sport
divisions. After the competition all the
divisions and all the athletes will be
awarded. This means that all 20 athletes
in our example would be awarded. In
each division a gold, silver and bronze
medal are awarded for 1st, 2nd and 3rd
places, with ribbons for the 4th to 8th
places.
When divisioning has been done
correctly and athletes are on the
same level of ability, it will be clear
in the competition. Any athlete may
win!
Golf players on the podium after a golf event
I believe this is the reason why our registered athletes increase
by 3 000+ every year. Athletes like to participate and to have fair
competitions; and to be awarded is the best form of acknowledgement.
With the process of divisioning, all of these important
factors are included. The Special Olympics South Africa
athletes are enjoying sport to the fullest!
A North West athlete proudly shows his medal,
which means so much to him.
33

Doctor’s
Prof Amanda Krause, MB BCh (Witwatersrand), PhD,
Senior Lecturer and Clinical Director at the Genetic
Counselling Unit, University of the Witwatersrand,
Johannesburg
Please e-mail your questions about genetic counselling to
national@mdsa.org.za.
What causes congenital muscular dystrophy (CMD)?
Congenital muscular dystrophy (CMD) is a diverse group of
inherited muscle disorders. They are thus caused by genetic
mutations. Children with CMD typically present from birth to
early infancy with hypotonia (floppiness). Some children also
have eye problems and/or developmental problems due to brain
abnormalities.
CMD can be caused by many different genetic faults in more than 15 different genes. In
any one family, faults would be found in only one gene. In addition, CMD can be inherited in some families in an autosomal
recessive fashion and in others in a dominant fashion. It is thus extremely important that affected individuals and/or
families be seen by a geneticist, so that appropriate investigation and testing can be done and family-specific risks identified.
Depending on the CMD subtype, clinical manifestations and complications can be very variable.
What are the complications of Duchenne muscular dystrophy (DMD) and how are they managed?
Duchenne muscular dystrophy (DMD) is a progressive muscle-wasting disease. Although the predominant effect is on
skeletal muscle, cardiac muscle can also be involved. It is important to monitor boys with DMD for early manifestations of
complications, as this can prolong survival and improve quality of life.
The most obvious manifestation is progressive muscle weakness. Although physical therapy cannot alter the course of the
disease, it promotes mobility and reduces contractures. Proper positioning and back support can also help to reduce scoliosis.
Prednisone is often helpful to improve the strength and motor function in children with DMD. It needs to be given
under careful medical supervision as side-effects can occur.
Boys with DMD can also develop heart muscle weakness (cardiomyopathy). This needs to be treated aggressively with
medication to avoid heart failure.
Because of the reduced physical mobility and chest muscle weakness in boys with DMD, they are prone to develop chest
infections. It is thus important that they be given pneumococcal and influenza immunisations annually. Chest infections
should be aggressively treated with antibiotics and physiotherapy. They should be evaluated by a pulmonologist and cardiologist
before surgeries.
In addition it is important that boys with DMD receive sun exposure and a balanced diet, rich in vitamin D and calcium, to
improve bone density and reduce the risk of fractures. Weight control is important to avoid obesity.
34

Rack ‘em, Stack ‘em, ‘n Pack ‘em
By Hilton Purvis
I have noticed a disturbing trend in our medical fraternity of
late which bothers me a great deal. It is the increasing usage
of a minimum consultation period of 10 minutes, coupled
with a system which staggers the appointments so that they
overlap one another. Now before you get the wrong impression,
I am not referring to some “hole in the wall” backroom
pseudo-medical doctors; I am referring to extremely expensive
private consultants based in some of our best hospitals
and private clinics in the country.
I have two problems with this practice. One, that 10 minutes
is insufficient time for a serious consultation, and by serious
consultation I mean one which has been booked weeks
in advance, i.e. not a sudden bout of flu, or a badly scraped
knee. Two, that by overlapping the appointments one is in
fact only receiving a portion of the allocated 10 minutes, and
only a portion of the doctor’s attention.
The staggering of the appointment takes the form of an undressing
stage, a consulting stage, and a dressing stage. The
doctor is present for only one of those stages. As an example,
one is ushered into a consulting room and asked to get
undressed (the doctor is not present at this stage). The doctor
then enters, asks a couple of questions, makes a diagnosis
or performs a procedure, and leaves. One then gets dressed
again, and you pay the bill.
While you were at the undressing, or dressing stage, the doctor
was consulting with another patient, in another nearby
room. It’s a production line of patients. One’s 10-minute appointment
is therefore broken down into three components
none of which exceeds three minutes in duration. More importantly
the actual consultation period where one is face-toface
with the doctor is little more than two or three minutes
in duration. Now I am sure some Business School graduate
or MBA consultant will tell you that on the part of the
doctor this is smart business because he is able to see three
times more patients, and take three times more money, but
we aren’t talking about mass production here, we’re talking
about people’s health and well-being.
Some time ago I had reason to engage with a doctor regarding
their diagnosis. Doctors generally don’t like their decisions
questioned, and this one was particularly annoyed that I had
dared to question, retorting that she was extremely busy with
a waiting room full of patients every day. When I suggested
that perhaps if she spent more time on her diagnoses, that
she would then possibly solve the patient’s problems more
correctly, which would result in fewer people having to sit in
her waiting room, the conversation was abruptly terminated.
During a visit to a specialist a number of years ago I was
fascinated by his secretary arranging the timetable for the
day across her desk. A vast and extremely impressive looking
“calendar” of little 10-minute blocks starting at eight in
the morning and extending right through the day. I had to
admire the accuracy, order and diligence of the exercise, and
be somewhat envious knowing that each little block represented
at least R800 (probably considerably more today),
but at the same time found it deeply frustrating knowing that
there was little chance of finding a solution to my problem
in such a limited time frame, and with an avalanche of other
patients building up behind me.
Couple this racking, stacking, and packing methodology
with a distinct inability to be able to “investigate” an ailment
and one is left wondering how they can possibly be
of any medical help. The lack of investigative skills is yet
another area of concern that I have noticed developing in the
last couple of years. I can’t help but think that the medical
universities could do with a course run by Scotland Yard as
part of the curriculum.
Unless the ailment literally jumps up and slaps the doctor in
the face they do not appear to have the ability to interview,
research, review, authenticate, analyse, and seek common
points to try and gain insight into the medical condition. The
mad rush to find an instant solution to one’s problem goes
hand in hand with the ticking clock on the wall as it closes in
on its 10-minute deadline.
These medical practitioners aren’t doctors in the sense that
we view them as healers. They are medical salesmen, much
like insurance salesmen. In much the same way as an insurance
salesman wants to sell you a quick, impulsive life insurance
policy, so these doctors are selling us quick medication
or procedures, without taking the time to find out what
the real question is.
35

Research
The following eight articles are from the News section of the Muscular Dystrophy Campaign
website (http://www.muscular-dystrophy.org/research).
Update on research into myotonic
dystrophy type 1
Friday 6 March 2015
On 23 February 2015, Muscular Dystrophy
UK research team visited Prof
David Brook and Dr Saam Sedehizadeh
at the Queen’s Medical Centre in Nottingham
together with Tom S Chamberlayne-MacDonald,
a representative
from the Cranbury Foundation.
The Cranbury Foundation has been a
longstanding supporter of the work of
Muscular Dystrophy UK on myotonic
dystrophy and is currently focusing
its funding on Dr Saam Sedehizadeh’s
project. The Foundation is a much valued
partner and continues to make a vital
contribution to our work in this area.
Dr Sedehizadeh is the recipient of one
of our Clinical Training and Research
Fellowships. Currently he splits his
time between the laboratory of Prof
David Brook carrying out research
and in the clinic working with Dr Paul
Maddison, Consultant Neurologist at
Queen’s medical centre.
Dr Sedehizadeh’s research aims to find
new compounds that can be further developed
in order to be used as potential
drugs to treat people affected by myotonic
dystrophy type 1. So far, scientists
in Prof Brook’s group have screened
thousands of compounds and found
12 which are promising. The scientists
are now focusing on two of these compounds
to further understand how they
work at the molecular level. Their aim
is to trial these compounds in patients
in the future.
Prof Brook is currently working to establish
a collaboration with the pharmaceutical
industry and if this is successful
he thinks the candidate drugs
could enter clinical trials within the
next five years. Dr Sedehizadeh also
aims to develop improved tests to assess
the benefits of drugs tested in clinical
trials. In order to improve clinical
trial readiness, the development of targeted
tests is crucial. These are called
outcome measures and can be defined
as measurable changes following a
treatment. They usually demonstrate
the effectiveness of a treatment. Measures
such as how far a person can walk
in six minutes (the six minute walk test)
may not always be sensitive enough to
show an improvement over the time
frame of a clinical trial. Therefore it
can be difficult to determine whether
the treatment is effective and to what
extent. Dr Sedehizadeh is aiming to develop
more sensitive measures such as
full body scans, blood tests and muscle
biopsies that can be used in addition to
the current tests to help determine the
effectiveness of a drug.
To date, Dr Sedehizadeh has recruited a
group of 60 myotonic dystrophy type 1
patients and is measuring the
following:
• Grip strength
• Ankle strength
• Timed walk test
• Blood tests
He is also looking at the following in a
subset of these patients:
• Low dose x-ray scan of the body’s
muscles, fat and bone (DEXA scan)
• Muscle biopsy
Following fantastic presentations from
Dr Sedehizadeh and Prof Brook on the
background of the project and their
achievements in the last year, we were
taken on a tour of the state of the art facilities
where the muscle strength of the
people involved in Dr Sedehizadeh’s
research is assessed. This was followed
36

y a visit to the laboratory where we
had the opportunity to see the robot that
is used to test new compounds for their
potential to be used as a drug in people
with myotonic dystrophy.
Dr Saam Sedehizadeh is in the second
year of his three year Clinical Training
and Research Fellowship entitled
“Therapeutics development and identification
of potential biomarkers in
myotonic dystrophy type 1”. The aim
of the fellowship is to encourage medical
graduates into an academic research
career specialising in the field of neuromuscular
disorders.
Tom S Chamberlayne-MacDonald
from the Cranbury Foundation said:
It was humbling and fascinating to be
among such brilliant scientists who
are clearly at the very top of their
game not just at a local level, but also
internationally. Professors Brook and
Dr Sedehizadeh are a credit to science
in the UK. The new branding
of Muscular Dystrophy UK will raise
the profile of the charity and I am
proud to be involved, in a very small
way, with such a centre of excellence.
Article online at http://www.musculardystrophy.org/research/news/8209
Correcting the genetic defect in
Duchenne muscular dystrophy
Tuesday 24 February 2015
Scientists at Duke University, USA
have successfully restored the production
of dystrophinprotein in cultured
muscle cells using a new technique
called gene editing.
Dystrophin is the protein missing in
people affected by Duchenne muscular
dystrophy. Its role is to protect the
muscle cells from damage when they
contract.
The researchers extracted myoblasts
from people affected with Duchenne
muscular dystrophy and cultured them
in the laboratory. Using the gene editing
technique called CRISPR/Cas9,
they have managed to restore dystrophin
production in these cells. In order
to test whether the cells are able to resettle
in the body the scientists re-implanted
them into the muscle tissue of
mice and saw that they were capable of
making human dystrophin protein.
CRISPR/Cas9 is a natural system
that is present in bacteria as a defence
mechanism against viruses that infect
them. Bacteria have special proteins,
or molecular scissors that recognise
and cut the DNA of the invading virus.
Scientists have made use of this system
and engineered it to target their gene of
interest.
In the case of Duchenne muscular dystrophy
the CRISPR/Cas9 machinery
is directed to the dystrophin gene and
cuts out the region that is mutated. This
means that a shorter but still functional
dystrophin protein can be made.
The aim of this approach is to restore
the mistake in the dystrophin gene and
transform Duchenne muscular dystrophy
into Becker muscular dystrophy.
Becker muscular dystrophy is characterised
by a shortened dystrophin protein
and is a much milder condition.
Most people affected might not have
any significant effect throughout their
lives.
The advantage of this approach is that it
could benefit more than 60% of people
affected with Duchenne muscular dystrophy
as it targets a large region of the
dystrophin gene, between exons 45 and
55, which is a region where most mutations
occur. Moreover, directly targeting
the gene to repair it removes the
need to repeatedly give foreign biological
material to patients and could potentially
even be a cure one day. However
the technique does not work very
efficiently at the moment.
Duchenne muscular dystrophy is a
devastating muscle wasting condition
mainly affecting boys. It is thought that
there are 2 500 people living with the
condition in the UK. There are currently
no known treatments or cures.
Dr Marita Pohlschmidt, Director of Research
at Muscular Dystrophy UK said:
This is a very exciting new approach
and the results of the experiments are
encouraging. Even though a lot more
research is required on the efficiency
of this system before it can even be
taken to the clinical trial stage, the
CRIPSR/Cas9 gene editing approach
offers an exciting opportunity for the
treatment of a large proportion of
Duchenne muscular dystrophy cases.
Article online at http://www.musculardystrophy.org/research/news/8191
Summit Therapeutics announces
first participant enrolment for new
Duchenne muscular dystrophy trial
Friday 20 February 2015
Last month Summit Therapeutics announced
that a new phase 1b clinical
trial was approved by UK regulators.
The trial aims to test the compound
SMT C1100 in boys with Duchenne
muscular dystrophy when they are on a
particular diet.
Today Summit Therapeutics has announced
that the first participant was
enrolled and dosed for the trial. The
trial will enrol a total of 12 boys aged
between five and 13 years. They will be
divided in three groups and each group
will receive a different dose of the compound.
If this trial is successful, a phase 2 open
label trial will be initiated. It will evaluate
the safety and longer-term effects of
SMT C1100 on muscle health and function.
Article online at http://www.musculardystrophy.org/research/news/8186
A new drug could slow heart damage
in Duchenne muscular dystrophy
Tuesday 17 February 2015
Research
Scientists have discovered that eplerenone,
a drug traditionally used for high
blood pressure and late stage heart
failure could slow the decline of heart
function in Duchenne muscular dystrophy.
A clinical study was carried out by Dr
Subha Raman, a cardiologist and professor
at Ohio State University and was
published in the medical journal The
Lancet Neurology.
37

Research
The study was based on previous results
in animal models of Duchenne
muscular dystrophy showing that
eplerenone, when used in combination
with other heart drugs, can reduce heart
muscle damage. However, further studies
are needed to understand the effects
of combination therapy to protect the
heart muscle.
In this new clinical trial, Raman and her
colleagues tested the effect of eplerenone
in combination with other heart
drugs on 42 individuals with Duchenne
muscular dystrophy that showed early
heart muscle damage. Each participant
was given either eplerenone or a placebo
once a day for a year, while also
taking heart medicine prescribed by
their physician. The trial was done in
a double blind way meaning that neither
the patients nor the clinicians knew
who was receiving the drug and who
was receiving the placebo.
After 12 months of taking the drug the
decline in heart function was significantly
reduced in participants who received
eplerenone compared to those
who received a placebo. The findings
of Dr Raman show that early use of
eplerenone could slow heart function
decline in people affected by Duchenne
muscular dystrophy.
In the future, a combination therapy
that includes eplerenone to prevent
heart muscle damage could be used as
standard in people affected by Duchenne
muscular dystrophy according to
Dr Linda Cripe, a co-researcher and pediatric
cardiologist at Nationwide Children’s
Hospital in Columbus.
Duchenne muscular dystrophy is a very
serious muscle wasting condition. The
first signs of the condition are difficulty
in walking, running jumping and climbing
stairs. As the condition progresses
the muscles involved in breathing and
the heart muscle are also affected.
Most patients develop respiratory and
heart failure in their 20s or early 30s.
Drugs treating complication associated
with breathing have improved life expectancy.
However deterioration of the
heart muscle remains the leading cause
of death.
Dr Marita Pohlschmidt, Director of
Research at the Muscular Dystrophy
Campaign said:
Heart failure is one of the major concerns
for people affected by Duchenne
muscular dystrophy. A lot of
therapeutic approaches address the
weakness of the skeletal muscle and
heart failure comes second. We particularly
welcome this study as it
addresses one of the major issues in
Duchenne muscular dystrophy. We
look forward to the results of further
clinical tests aimed at confirming
these initial findings.
Article online at http://www.musculardystrophy.org/research/news/8177
New clinical trial for SMA drug
Friday 30 January 2015
A new clinical trial for people with spinal
muscular atrophy (SMA) types 2
and 3 is now recruiting participants in
London and Newcastle. The aim of the
trial is to test the effectiveness of a new
oral drug in increasing the production
of the SMN protein.
SMN or survival motor neuron protein
is essential for the survival of motor
neurons, the nerves that control the
movement of the muscles.
We have two genes that make SMN
protein: SMN1 and SMN2. The protein
is mainly made from the SMN1 gene
while the SMN2 gene only produces
about 10% of functional protein.
People affected by SMA carry a mutation
in the SMN1 gene and no protein
is produced from this gene. The small
amount of functional SMN protein
produced from the SMN2 gene is not
enough for the nerve cells to function
properly. This leads to muscle wasting.
The drug RO6885247 has been tested
on animal models of SMA and it was
found that it significantly increases the
production of functional SMN protein
from the SMN2 gene. It was also found
that the drug improves the function of
the nerve cells and extends the life span
of the animals.
The drug was developed as a collaboration
between PTC, Roche and the SMA
foundation. The current trial is sponsored
by Hoffmann-La Roche.
The drug is now in phase I clinical trial.
In the UK there are two sites, one in
London and one in Newcastle recruiting
both male and female participants
aged 16 to 55. At a later stage the trial
will be extended to include participants
from two years of age. The trial is also
taking place in Italy, the Netherlands,
Switzerland and the United States.
To be considered for the trial, individuals
must have a confirmed genetic diagnosis
of SMA types 2 or 3. Individuals
who have participated in other clinical
trials in the past, have undergone surgery
for scoliosis in the last six months
or have kidney, liver or heart problems
may not be eligible.
Individuals will receive the drug for a
period of 12 weeks. The trial will be
placebo controlled and be conducted in
a double blind way meaning that neither
the participants nor the clinicians
will know who is receiving the placebo
and who is receiving the drug.
The effect of the drug on the production
of functional SMN protein will be
tested. A number of blood and muscle
function tests will also be performed to
test the safety and effectiveness of the
drug.
Dr Marita Pohlschmidt, Director of
Research at the Muscular Dystrophy
Campaign said:
We are encouraged to see that a new
drug that has the potential to help
people affected by spinal muscular
atrophy is being tested in clinical trials.
We have funded research into SMA
for many years. We look forward to
the results of this phase I trial.
Article online at http://www.musculardystrophy.org/research/news/8117
38

New research on the effects of
vitamin supplements on FSH
Monday 26 January 2015
Preliminary results of a new clinical
trial on facioscapulohumeral muscular
dystrophy (FSH) suggest supplements
may have a small beneficial effect on
the condition’s progression. Further
studies are required, however, to confirm
these early results.
This study was carried out by scientists
at the University of Montpellier
(France). Their published results suggest
that supplements such as vitamin
C, vitamin E, zinc and selenium might
have a positive effect on muscle function
in individuals with FSH.
Dr David Hilton-Jones, a Consultant
Neurologist at the Radcliffe Infirmary
at Oxford, said:
The supplements led to some improvement
in thigh muscle strength,
but there is no evidence that they
have an impact on walking ability.
Most importantly, the study did not
assess the effect of these supplements
on those muscles most markedly involved
in FSH such as the shoulder
muscles. Further studies, over a longer
time-course, are needed to see if
such supplements have any practical
benefits and at the moment we cannot
recommend patients taking them.
The Muscular Dystrophy Campaign
welcomes this new trial towards understanding
the potential benefits supplements
might have on people affected
by FSH. However, the study included
only a small number of people and the
results should be taken with caution.
We want to stress that taking supplements
particularly in high doses over a
long period of time and without medical
advice could be harmful. In addition,
the effect of these supplements
might vary in different people and
might depend on factors such as age,
diet and severity of the condition, said
Dr Marita Pohlschmidt, the charity’s
Director of Research.
The Muscular Dystrophy Campaign
has been leading the fight against
muscle-wasting conditions for over
55 years and is committed to keeping
families up-to-date about new research
advances.
The idea behind the study
All cells in our body, especially muscle
cells, require oxygen to produce
the energy necessary to carry out their
functions. This energy production process
generates by-products such as free
radicals that can be harmful to the cells.
There are a number of mechanisms
in place that neutralise these harmful
by-products and protect the cells from
damage.
In individuals affected by FSH, a region
in the DNA that normally silences
a gene called DUX4 is missing. The deletion
results in DUX4 becoming overactive
and the mechanism that protects
the cells from free radicals cannot function
properly. Researchers think that
this might contribute to muscle wasting.
Supplements such as vitamin C are
known to have protective effects
against free radicals. To study the potential
benefits of these supplements on
people with FSH, a clinical trial was
carried out.
The participants were divided into two
groups and were given either a combination
of vitamin C, vitamin E, zinc
and selenium or a placebo over a 17
week period.
The researchers then measured the
strength of the participants’ thigh muscles
and how far they could walk in two
minutes.
The results of the study showed that the
thigh muscles of the group taking the
supplements became slightly stronger
compared to the group taking the placebo.
However, the participants who
took the supplements could not walk a
longer distance than those who did not
as measured by the two-minute walking
test.
We hear from a lot of people with
FSH who want advice on the benefits
of supplements. Clinical studies such
as this one are important as they can
provide the evidence for clinicians
to make better recommendations to
their patients. However, the results of
this particular study are not conclusive
and further larger trials are needed
to understand the precise benefit
of the supplements on FSH, said Dr
Pohlschmidt.
Article online at http://www.musculardystrophy.org/research/news/8107
Summit gets the go-ahead for new
clinical trial
Monday 19 January 2015
Research
Summit Corporation plc has announced
approval from UK regulators to start a
new clinical trial. This phase 1b study
will test SMT C1100 in boys with
Duchenne muscular dystrophy, when
they are on a particular diet.
SMT C1100 was designed to increase
levels of utrophin in the muscles. Researchers
believe this may compensate
for the lack of functional dystrophin
found in Duchenne and Becker muscular
dystrophy, regardless of the mutation.
This announcement of Summit Corporation
plc (a biopharma company based
in Oxford) follows a successful clinical
trial earlier this year, which showed
SMT C1100 to be safe and well-tolerated
in boys with Duchenne muscular
dystrophy.
The new trial aims to test whether
a particular diet will improve SMT
C1100 levels in the bloodstream and
help with take-up of the drug into muscle.
Researchers aim to recruit 12 boys
between the ages of five and 13, at four
UK NHS hospitals. Each boy will receive
a placebo and two different doses
of SMT C1100 for 14 days, with a 14-
day pause between each of three treatment
periods.
As well as monitoring the safety and
tolerability of the drug, clinicians will
measure the amount of the drug entering
the bloodstream. In addition, they
will also measure changes in an enzyme,
which is a marker of damaged
muscle fibres.
39

Research
As soon as further information is available
regarding the recruitment process
we will make a further announcement.
Summit Corporation plc said it would
announce the results of this trial in mid-
2015. If successful, it will be followed
by a Phase 2 trial to test the benefit of
SMT C1100 and to monitor its safety
over a longer period of time.
Glyn Edwards, Chief Executive Officer
of Summit, said:
We believe it is possible to enhance
absorption of SMT C1100 through
dietary means and this new patient
trial is designed to test this so that we
can confidently evaluate the efficacy
of utrophin modulation in subsequent
clinical trials. We believe that utrophin
modulation has the opportunity
to benefit all boys with DMD [Duchenne
muscular dystrophy] and we are
working to ensure this molecule has
the best chance to reach the market
through a well-designed clinical path.
The Muscular Dystrophy Campaign
works closely with the Utrophin Alliance.
This strategic partnership between
Summit Corporation plc and
Oxford University was set up to speed
up the development of treatments for
Duchenne muscular dystrophy. The
charity currently funds research projects
in Professor Kay Davies’ and Dr
Angela Russell’s laboratories in the
search for more efficient drugs with the
potential to raise utrophin levels.
Background information
The Muscular Dystrophy Campaign
has funded Professor Kay Davies’ research
into utrophin for more than 25
years. It is thought that utrophin, a
protein naturally present in our body
in small amounts, may be able to compensate
for the lack of dystrophin in
boys with Duchenne muscular dystrophy,
since both proteins are structurally
similar and appear to have very similar
functions. In collaboration with Summit,
Professor Davies’ laboratory discovered
and developed SMT C1100 to
increase levels of utrophin in the body.
The results of the trial are encouraging,
as the drug has the ability to treat
so many boys. Unlike other approaches
40
such as exon skipping, SMT C1100
may have the potential to treat all boys
with Duchenne or Becker muscular
dystrophy, regardless of their genetic
mutation.
Article online at http://www.musculardystrophy.org/research/news/8031
Follistatin improves walking ability
Tuesday 30 December 2014
Dr. Jerry Mendell’s group from Nationwide
Children’s Research Institute,
USA recently published the results of
a clinical study for Becker muscular
dystrophy. The study demonstrated that
injecting a modified virus carrying the
follistatin gene into leg muscles of people
with Becker muscular dystrophy
was not only safe, but also improved
muscle strength.
The results of the clinical study are encouraging
and provide initial evidence
that increasing the levels of follistatin in
leg muscles of individuals with Becker
muscular dystrophy can increase their
ability to walk a longer distance. More
extensive clinical studies are necessary
to confirm the initial results and also
test whether walking ability is maintained
until later in life.
The clinical trial followed encouraging
tests in animals showing that delivery
of the follistatin gene, through a
harmless virus called adeno-associated
virus, was safe and improved muscle
strength. This could also be achieved in
a mouse model for Duchenne muscular
dystrophy where dystrophin is missing.
The follistatin gene carries the information
for a protein produced in a number
of different tissues in the human body.
In the muscle it is known to inhibit a
protein called myostatin, which is responsible
for the reduction of muscle
mass and strength. Increased levels
of follistatin therefore lead to reduced
myostatin activity, which results in increased
muscle mass and strength.
The strength of the quadriceps (a leg
muscle) is one of the factors that has
an impact on the ability of individuals
with Becker muscular dystrophy to
walk. The rationale of the clinical study
was to test whether the delivery of the
follistatin gene to this particular leg
muscle could strengthen it and improve
the individual’s ability to walk.
Six participants with Becker muscular
dystrophy were enrolled on the clinical
trial. They had to be able to complete
the six-minute walk test (6 MWT),
which assesses the distance people
are able to walk in six minutes. Three
participants received a low dose of the
virus, while the other three received a
high dose.
After a year, the two individuals receiving
the low dose showed an improvement
in their walking ability. They
could walk 58m and 125m further in
the 6 MWT, respectively. The third
individual did not show any improvement
in his walking ability. The same
was observed in the group that received
the high dose: two individuals showed
an improvement of 108m and 29m in
the 6MWT respectively, while the third
did not show any improvement in his
walking.
The researchers used magnetic resonance
imaging (MRI) and took muscle
biopsies to visualise the structure of the
muscles. This showed that muscle cells
had increased in size but also showed
that fibrosis was stronger in those in
whom walking ability had not improved.
They therefore concluded that
a greater amount of fibrosis might prevent
the muscles from getting stronger.
Most importantly, the clinical study
showed that injections of the modified
adeno-associated virus were safe and
no complications were observed.
The researchers will also test whether
the same approach could work in people
with other muscle-wasting conditions
and they have already started a
clinical study including individuals
with sporadic inclusion body myositis.
They are also planning a study in individuals
with Duchenne muscular dystrophy
where they will inject the virus
into various muscles.
Both studies will take place in the US
and will include only a small number of
participants who will be invited by the
investigators.
Article online at http://www.musculardystrophy.org/research/news/8063

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Imagine that you have two bins in your head, one for
recyclable and one for non-recyclable thoughts. We
can all identify with those niggling thoughts that come
to mind. Maybe you think that the day ahead will be
difficult, some colleagues will not agree with your ideas
on a project, some people do not like you, things you
planned may not succeed, you did not prepare effectively
for the exams, or even that something you said to
a friend might be interpreted in a different way. These
thoughts go on and begin to take on a life of their own.
They become bigger and sound louder in our heads, to
a point where we shut out everything else and become
the victim of these thoughts.
Sandra’s thoughts on …
... Recycling your thoughts
By Sandra Bredell (MSW)
“You may not control all the events that happen to you,
but you can decide not to be reduced by them” Maya
Angelou
What does it mean to recycle? It means to dispose of
the things you do not use, in such a way that you conserve
the environment. When we think of recycling, a
few things come to mind. What can be recycled? Is it
necessary to recycle? Why would we want to become
part of the recycling culture?
Firstly, we can recycle paper, glass, styrofoam, plastic
and cans. These items form part of the recyclables and
need to be thrown in the containers provided specifically
for that. Non-recyclables such as chip packets, chocolate
and sweet wrappers, and food-spoiled containers
and food leftovers are disposed of in another way appropriate
for these items. So, it makes the task of recycling
easier if you know what to recycle and where to go
with it. Which brings us to the question of whether it is
necessary to recycle. If we do not commit to recycling, it
has a ripple effect on the environment and complicates
the process of recycling recyclables. Then why would
we want to become part of the recycling culture? This
involves our attitude towards recycling. Do we have an
understanding of “going green”? Are we prepared to
make an effort?
In the same way our minds become “cluttered” with
thoughts and information and need to be “sorted”
from time to time. Again you have the choice to decide
whether you want to make the effort to “recycle” your
thoughts. If you know what can be “recycled” and you
have made the commitment to make an effort, this can
become part of your daily life. How do we “recycle” our
thoughts?
What really gets to you is the fact that you cannot find
the “switch” to turn off your thoughts for a while, or the
“remote” to switch to another “channel”. These thoughts
become so powerful, they invade your day and your
life. If this is the case, then reach out for the “manual to
recycle your thoughts”.
Now start the process of sorting your thoughts by using
a simple technique.
1) Whenever you become aware of thoughts that
make you feel angry, alone, pushed aside, rejected,
hurt, sad or irritated and that eventually cause you
to think negatively about yourself, a situation or
another person, ask yourself, “Is this a fact?” “Is
what I am thinking a fact or is it my assumption
or idea about a situation or person?”
2) Start to “de-clutter” your thoughts by asking yourself
the next question. “Is this thought contributing
to clarify some information or is it confusing me
more?” In other words, “What is the purpose of this
thought?”
3) “What is the ripple effect of this thought? Does it
have a positive or good effect on me, about me, on
my situation, on others?”
According to Ray Taylor, if you get a “No” to any of the
questions, then discard those thoughts and think about
something else that makes you feel happy and good
about yourself.
Until next time, take good care of yourself and practise
the skill of “recycling” your thoughts!
References:
Landry, A. 2009. How to create change by recycling
your thoughts, feelings, and actions. Examiner.com (29
July). Online at: http://www.examiner.com/article/howto-create-change-by-recycling-your-thoughts-feelingsand-actions
Recycle brain and neuroplasticity. © 2007-2015. Horizon
Research Foundation. Online at: http://www.horizonresearch.org/main_page.php?cat_id=255
The T.U.G. technique – stop recycling your thoughts
and worrying!!! 2008. Reach Beyond (12 November).
Online at: http://www.reachbeyond.com/blog/10/thetug-technique---stop-recycling-your-thoughts-and-worrying
42

Condolences to the Talia Family
“RIP Yusuf Talia, the good die young,” wrote one admirer
on Twitter. The steady stream of eulogising tweets soon
got the name of the young leader trending in South Africa.
He was renowned for the spirited battle he fought against
Duchenne MD, and he campaigned throughout his life for
common dignities and better opportunities to be afforded
to those with physical disabilities.
Yusuf was an inspiration to everyone who crossed his path
and knew him. Our sincere condolences to
Nazier, Fatima, Waseem, family and friends. Ed.
Our sincere condolences to Family and Friends of:
Yusuf Talia – 22/09/2014 Daantjie du Toit – 28/10/2014 Dean Saunders – 18/10/2014
Stefan van Wyk – 17/11/2014 Dartanian Syms – 29/12/2014 Yaqeen Siddiqi – 2/12/2014
Siphosethu Folokwe – 10/02/2015 Anas Howburg – 10/02/2015 Sipho Bodibe - 01/10/2014
Kelebone Majola - 29/12/2014 Janet Lavis - 22/01/2015 Tshwarelo Otse – 10/03/2015
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Cape Branch
A TRIBUTE TO
HARLEY-DAVIDSON
We looked at all manner of fundraising activities but our then
committee members, of which I was one, were very “lig in die
broek” as they say in Afrikaans as regards fundraising, meaning
inept and naïve. We had little idea of how to fundraise, and
although we certainly tried our best, funds were meagre to say
the least.
Out of the blue the Harley-Davidson Club of Cape Town approached
us as they wished to take on muscular dystrophy as a
charitable initiative, as they do in the United States of America.
The Harley-Davidson Club of Cape Town really put us on the map
when we were presented with our fi rst REAL donation of R20 000
from their fundraising effort, which was an annual ball.
That money enabled us to purchase our very fi rst motorised
wheelchair for a young man with spinal muscular atrophy by the
name of Dylan Thomas. That wheelchair allowed him to further his
studies. He was so very proud of that chair and the freedom it gave
him to realise his dream of studying.
1974–2014
In 2014 the Muscular Dystrophy Foundation of South Africa celebrated its
fortieth year in South Africa, whilst in Cape Town we celebrated the 20th
anniversary of the Cape Branch. Looking back on our very humble beginnings,
of holding meetings in various committee members’ homes, we
have really seen amazing growth of the Cape Branch to what it is today.
Our branch started with absolutely nothing but a fi erce determination to
assist folk diagnosed with muscular dystrophy and their families, as there
was absolutely no support or assistance offered to muscular dystrophy
sufferers in South Africa in any way. The Cape Branch is proud to say that
it set the standard for the structure in place in South Africa today.
That motorised wheelchair became the benchmark of our activities in providing “real” assistance to our members.
The standard was then set that motorised wheelchairs were essential to allow folk to be independent and develop
leadership skills for future study and careers.
Our young Duchenne boys needed motorised wheelchairs, and so did our young girls and boys with spinal muscular
atrophy. Whatever mechanical means of transport or other aids they needed, we endeavoured to supply.
Over the years Paula Lehman undertook mammoth fundraising
events, and thousands of rands were raised for our children
and adults in need. She was later assisted by Julie Knutzen
and Liz Immelman.
Harley-Davidson has always been incredibly generous towards
our muscular dystrophy family in Cape Town – much to the envy
of our two other branches in Kwa-Zulu Natal and Gauteng. You
have helped so many, many less fortunate people to live more
comfortable, fulfi lled lives, integrated within their families and
the community at large.
On behalf of everyone you have assisted, may you be greatly
blessed.
We thank you.
44
Win van der Berg
Chairperson – Muscular Dystrophy Foundation Cape Branch

Cape Branch
Dear Musculars
You can be anyone,
Anyone you dream
You can go anywhere,
Do anything,
Meet anyone
Let your imagination take control
Take you on adventures never told
You can swing from every tree top
You can conquer any fear
You can fly above the mountains
You can swim beneath the sea
It’s a great big world before us
Come along and dream with me
With lots of love
From Abraham Mourries – Aged 15 – Pupil at Astra School
David Viljoen - a positive example
I met David through the Muscular Dystrophy Foundation Cape
Branch in 2012 and we have become good friends. I morally support
him and help where and whenever I can. He is such a positive
person and is an inspiration to everyone he knows.
In December 2014 David came down from Despatch (where he
currently resides) to Cape Town to see Prof J Heckmann at Groote
Schuur Hospital’s Neurology Department.
He stayed with me at the retirement village and enjoyed taking part
in all our activities.
David cannot sit still and be bored, so at one stage he said I must
teach him how to crochet as he already knows how to knit and has
been covering anything possible with his knitting projects. So I set
off with the crocheting lessons. Two days before he left here he had
already crocheted two blocks, and seeing the result in the photo he
defi nitely has had a lot of practice. Well done David!!!
You have achieved more than many skilled ladies have. I will be the
fi rst one to order a pink jersey please. Keep up your hard work and also
being an asset and an inspiration to everyone you know.
Anne-Marie Stoman
45

Cape Branch
MD CHILDREN’S
CHRISTMAS PARTY
On 26 November we took our children on a picnic to the beautiful
Urban Park in Green Point. We selected this lovely new park because
of the space and diversity of fl ora within the gardens, which
exposed the children to the wonders of nature while enjoying an
exciting picnic.
The ladies of the Harley-Davidson Club of Cape Town were
amazing in that they got together and made up parcels for each of
our muscular dystrophy children.
These beautifully wrapped gifts were brought to the venue by Paula Lehmann and Julie Knutzen, who were the
conveners of the gift box project.
Well, as you can see from the photographs, the excitement
and joy experienced by each child as they opened their gifts
was awesome. Some children immediately started playing
with their toys, others ripped off the tee-shirts they arrived in
and wore the new one gifted to them. Others quietly opened
their boxes and carefully peeped in, closed the box and put it
away to peruse and treasure back home.
A huge Thank You to the Harley-Davidson Club of Cape Town’s
ladies for this most touching and rewarding project.
The morning ended with a lunch box from McDonalds.
Very tired and very happy children then returned home.
Win van der Berg
DARTANIAN SYMS
27/01/1996 – 29/12/2014
It is always too soon to say good-bye and it is with sadness that we
bid farewell to Dartanian. He had been part of the Muscular Dystrophy
Foundation Cape Branch since 2003. In that time we got to know
this fun-loving young boy who grew up to be a handsome and caring
young man.
Dartanian’s mom said:-
“He was always there to lend an ear to our problems and always gave
good, insightful advice. He was our ‘Dr Phil’. He loved soccer, fast
cars and wrestling (WWE). He enjoyed playing PlayStation because it
gave him the freedom to do things that were not normally possible. He
always knew the right thing to say to make one feel better. Dartanian
was also known as ‘Dots’ or ‘Pooh-Bear’ to his family and friends. We
will always love him and keep him in our hearts forever. We will surely
miss him.”
Rest in God’s peace, our beloved Dartanian.
46

Grace Mahlangu
receives a new
motorised wheelchair
Gauteng Branch
On 3 February Grace Mahlangu, 7 years old, received
a new motorised wheelchair donated by ACSA.
Jonathan Rudman, one of our Muscle Riders, wrote
a letter to ACSA in Cape Town and sent them a video
of Grace wherein we asked people to help us raise
funds so that Grace did not have to sit in a manual
Pictured: Rear: Marius Crous (Acting Principal, Hope
School), Portia Mokone, Alette Kleinhans,
Gillian Spencer-Young, Verna Campbell
Front: Pieter Joubert, Grace Mahlangu, Jonathan Rudman
wheelchair and watch when other children were playing. Grace could not stop smiling when she received her
wheelchair and is now able to move around independently. We also gave her a goody bag and book as she likes to
read. Her parents were delighted and thanked everybody who made it possible for Grace to be a child.
1st Eagles Cubs &
Scouts
When we started to collect bread tags we had no idea
what we had gotten ourselves into. It was a mammoth
task, whereby the cubs, their parents, friends and the
scouts had to collect 50 000 bread tags to be able to
be awarded a manual wheelchair and to donate it to
someone within our community.
Pictured: Debbie Ferguson (Pack Scouter), Dean Ferguson
(Scout), Pieter Joubert (MDF Gauteng) and Guy Berrington
(District Commissioner West Rand)
We were delighted when our target was reached.
We contacted the Muscular Dystrophy Foundation
and were happy to hand over the wheelchair
so that they could help someone who needed
assistance. They helped Jacques Marais, who
has cerebral palsy.
Pictured: Front: Jacques Marais & Pieter Joubert.
Rear: Rae Bagus, Jewahn & Babsie Marais.
Jacques, his mother and brother were very happy
to receive a new wheelchair and wished to
thank the 1st Eagles Cubs and Scouts as well as
the MDF Foundation.
47

Gauteng Branch
Christmas Lunch for
Staff
On 9 December staff of MDF Gauteng and the National
Offi ce had a lovely lunch at Silver Star Casino in
Krugersdorp. Pieter Joubert thanked our staff for their
hard work and wished everybody a good rest and festive
season.
Annual Chiropractic
Golf Day 2015
The Annual Chiropractic Golf Day took place on 18
February 2015 at Jackal Creek Golf Club. This is a
day organised by the WCCS (World Congress of
Chiropractic Students) - University of Johannesburg
Chapter.
The profi ts are going towards The Door of Hope Orphanage
and the Muscular Dystrophy Foundation
Gauteng charities and to help send UJ student
delegates to the World Congress of Chiropractic
Students AGM in Atlanta, USA.
Front: Sam Pearson, Gillian Johnson, Braam Roux,
Pieter Joubert
Rear: Rebecca Mocke, Thiani de Beer, James Lowe,
Gareth Hardie, Etienne Zeeman
Thank you once again for your continued support.
We would like to thank Gareth Hardie and Gillian
Johnston, who arranged the golf day. Thank you to
all the players and sponsors who support our cause.
Rare Diseases Awareness
Day 2015
We had two awareness days at the
Charlotte Maxeke Hospital, Johannesburg
on 18th April and at the Steve Biko
Academic Hospital, Pretoria on 26th April,
which were very successful. We handed
pamphlets and magazines to the public
and staff at the hospitals.
Pictured: Rear: Kagiso Mkuchane,
Nomzamo Luzombe, Dina Willemse
Front: Pieter Joubert & Braam Roux
48

Gauteng Branch
Daphne Mkhuhlane says
Thank You
Daphne was unable to go out of the house and spent most
of the time in her room as the wheelchair that she had was
in a bad condition and not worth repairing. She was delighted
when we delivered the motorised wheelchair that
Mobility Aids CC had kindly donated. We wish to thank
Verna Campbell for her assistance and offering to donate a
wheelchair for Daphne.
Pictured: Daphne Mkhuhlane & Portia Mokone
Tlamelang Special School
Thank You
We would like to thank the Muscular Dystrophy
Foundation Gauteng for the motorized wheelchairs
we received! We are learners of Tlamelang
Special School and sometimes struggle to
get help while using our manual wheelchairs.
Now we can get around on our own.
Thanks once again for the people who made it
possible for us to have our wheelchairs.
Greetings
Victor Jautse, Regomoditswe Mmoaleng, Ditiro
Basiami.
THANK YOU TO MDF
FOR MY NEW
WHEELCHAIR TYRES
I would like to express my gratitude for the assistance received from the Gauteng Muscular Dystrophy Foundation.
My new tyres are wonderful. My wheelchair feels brand new. And thank you as well for having my control reattached;
I can now move around without the fear of it falling off and without the embarrassment of my wheelchair
looking patched together.
Pieter, Braam and Portia, you have exceeded my expectations with your professional, prompt and friendly assistance.
I am very impressed and extremely appreciative of your efforts.
Yours sincerely
Bernadette Francois
49

KZN Branch
KZN CHAIRMAN
REPORT
By Noel Pillay
The year 2015 is going to be a very exciting time in the life of the
Muscular Dystrophy Foundation KZN.
We started this year in our new offi ces, which we acquired after members
had diffi culty attending meetings at our previous offi ce in Gillitts.
We have increased our database and hope that the membership will
continue to rise, with our offi ces now being easily accessible to everyone.
Our banking account is now operational. This took almost a year, but at
last we have overcome all the challenges.
A volunteer recruitment strategy plan will be put in place after allocating a manager for that department. Volunteers
are the people who keep the wheels turning in an organisation like ours. These are the people who make our organisational
plans and projects successful.
I would like to thank all individual and corporate donors for their support. I trust we can rely on them for their continued
support. Through donations received we have been able to assist our members and maintain the offi ces.
I would also like to thank the members of the committee and the offi ce staff for all their support. Our offi ce staff perform
large duties and yet are just a small team. They share their expertise and face the diffi cult challenges thrown
their way. Our office staff are also motivated by the pleasantries of our members.
My sincere appreciation goes to each and every one for all their support.
KZN AGM
A GREAT
SUCCESS
On Saturday 21st February 2015 we held
our AGM in the hall at our offi ce premises –
24 Somtseu Road, Durban. The AGM was
a great success and was well attended. Our
members enjoyed refreshments, cakes and
treats, which were very kindly sponsored
by Westville SuperSpar, North Beach Spar,
Westville Junction Pick n Pay, Aquelle, Golden
Treats, Esme Rubin, Tanya Pretorius, Sheila
and Soni and Anuka Sewsanker.
We would like to thank all who contributed to
making our AGM the success it was.
50
Pictured: Raj Mahadaw, Noel Pillay & Pam
Rapiti

KZN Branch
Welcome Ashmika
Gungadeen
My name is Ashmika Gungadeen. I live in Durban, KwaZulu-Natal. I
recently returned to South Africa from the United States of America,
where I spent the past four years pursuing my degree in Child Psychology.
I studied at the Union County College, which is situated
in the heart of New Jersey. Living abroad has changed my entire
outlook on life and groomed me to become an independent young
lady. It has also given me a much greater understanding of other
religions as well as the opportunity to learn more about other cultures.
I joined the Muscular Dystrophy Foundation from the beginning
of 2015. I am extremely passionate about the MDF and helping
those in need. I have fi rst-hand experience of what it is like for
people who have taken care of their loved ones affected by muscular
dystrophy. This affected my late cousin, which still reminds
me of this incurable disease; hence I am able to feel the struggles
our members go through daily with their loved ones.
Through my journey in life I have done what I could do, and I am willing to give back to those in need, and this is
why I fi nd myself in this position with the MDF today. I am looking forward to spending my time with the MDF and
hoping to create many memories along the way for people affected by muscular dystrophy.
Heather Ainsworth
I was born in Durban, to Basil and Nicky Armstrong, and attended
the Westville Schools. After matriculating I went to the University
of KwaZulu-Natal, where I graduated with a B. Procurationis (B.
Proc.) degree in 1993, with Maritime Law as my speciality.
In 1994 I went to England with my boyfriend, Glen Ainsworth,
where I was employed in various capacities – employment agency
and reception work – mostly in positions interacting with people,
which I thoroughly enjoyed. In South Africa your law degree is
based on Roman Dutch law, so if you want to be in an employment
position in law in England, you have to attend university again, to
‘convert’ to English Law – further studying – so I opted for employment
with some income. We got married and were blessed with
two beautiful little girls, Kelly (18) and Tyler (14). We lived in London
for ten years and returned to Westville in 2003 to live here permanently.
Unfortunately my marriage failed and we got divorced
in 2010, after a separation for three years. I was in the fortunate
position of not having to work while we were married. I have been
working for the Foundation for over fi ve years now.
Life as a single mum is demanding, and very tough, but with my
trust in God and the unfailing assistance in so many ways of my
parents and many friends, plus my work with the beautiful children
with MD and their families, I have been richly rewarded.
51

KZN Branch
KWAZULU-NATAL
BRANCH MOVES
OFFICE
In 2012/2013 the executive committee of the KwaZulu-Natal
Branch committed itself to the vision of paying weekly
visits to the offi ce that we shared with Ari Seirlis and his
team at the QASA premises in 17 Hamilton Crescent in
Gillitts. The weekly visits were to monitor administrative
processes and service levels and to ensure that our staff
were managing to meet the various requests timeously
from our members, volunteers and, most importantly, our
patients.
Unfortunately, as volunteers on the executive committee with our own work/business commitments, we found that
the travelling time to and from the offi ce in Gillitts did not allow us to meet our other obligations. Consequently
there was a need to strategise a way forward on how we as a team could make it as convenient as possible for the
people who elected us to serve them.
The executive committee of Maxine Strydom (Chairperson), Iris Govender (Vice Chairperson) and Raj Mahadaw
(Treasurer) sat around the table to discuss the possibility of moving to premises somewhere near to the Durban
business district, which was one of the Branch’s strategic planning priorities for 2013. We knew it would be a major
change for all of us, and we anticipated resistance and the fear that it would be too costly a decision.
52
Whilst cost was a concern, which we deliberated
over at many meetings, we were also
used to sharing offi ce space rather than being
located independently. After every meeting
held to discuss the move, it was found
that the grass looked greener on the other
side of the fence, and a change of location
looked like the most promising path for the
KwaZulu-Natal Branch’s growth.
The election of the new Chairman, Noel Pillay,
in 2013 and his vision to make the move the
executive committee’s fi rst priority allowed us
to continue with the vision and strategic planning
which had been agreed upon by the previous
executive committee. After much searching
for the right premises since mid-2014, and
after days spent making enquiries on security
and transportation aspects and whether the location
would be convenient for our people, we
found suitable premises at a newly renovated
building which forms part of the Kingsmead
Offi ce Park.
The mission of the owners of 24 on Somtseu Road was to offer their premises only to non-profi t organisations. The
only other tenant at that stage was the KwaZulu-Natal Branch of the Red Cross Society of South Africa.
Our move in October 2014 to the newly furnished offi ce, which can accommodate four staff and a meeting area,
was welcomed by a number of people who had never known that we existed. We are now able to receive visitors,
who are welcomed to sit down to refreshments, whilst our offi ce staff, Heather Ainsworth and Ashmika Gungadeen,
discuss what muscular dystrophy is all about. The vast increase in turnout at this year’s annual general meeting is
a positive sign that our location is convenient to the people that we serve.

KZN Branch
We are amazed by the positive feedback that we
receive on a daily basis and are grateful for a very
loyal donor who sponsored the various signs,
which attract a number of visitors.
The offi ce has as neighbours the Durban Hindu
Temple, Metro Police Traffi c Courts, Durban Magistrate’s
Court, Transnet, and Standard Bank
Centre, and it is convenient for the people that we
are here to serve. Most importantly, it is wheelchair
friendly, and Durban’s People Mover buses,
which transport our people with disabilities, stops
right in front of the offi ce.
We are thankful to Ari Seirlis and his team for
having accommodated our Branch at the QASA
offi ce in Gillitts for the past few years.
We make an appeal to our members, volunteers
and patients to come and spend time with
us at our new premises and be part of our KZN
Branch. Remember that this is your Branch. We
are open Monday to Friday from 08h30 until
16h00. Should you wish to fi nd out how you can
be part of the volunteer programme, please call
the offi ce on 031 332 0211.
Dear MDF KZN
THANK YOU!
There are no words to express how grateful I am to you for the power chair you have blessed me with.
It has changed my life in ways that are diffi cult to put into words,
but I am mostly grateful for the independence it’s given me, for the
“walks” that my fi ancée, Sandy, and I can do now and for the general
freedom I have. I am now able to travel to and from work on my own,
which takes massive pressure off those around me, especially my
Sandy.
I was diagnosed with spinal muscular atrophy type 3 at age 3, and
I went into a chair at 14 years old. I continued to strive and push
forward. I attended Open Air School, where I took part in cricket and
chess and was head boy for the year of 2002. My disability doesn’t
defi ne me; my attitude towards life is not tarnished by it at all. Some
days are diffi cult, but for the most part we get by just fi ne. After school
I studied draughting. I currently work for a shipping company and
have been with them for the past 10 years.
I’m blessed with a wonderful family and fi ancée, Sandy, who make my
life as easy as possible. However, guilt always attacks, and now with
my new motorised wheelchair I rely less on the assistance of others,
as I would previously tire very easily when propelling myself.
We are so grateful to you all and are now busy planning our wedding in
August 2015. With my new wheels; I’ll be able to share a magical fi rst
dance with my beautiful wife to be.
Be kind, be fair, but above all be proud to be you!
Yours sincerely
Craig Jooste
53

KZN Branch
Veronique says Thank You
I would like to thank you most sincerely for my beautiful and sensational
electric wheelchair. My wheelchair really has made a huge difference
in my life. I use my wheelchair to make a living. I would like to
thank the Muscular Dystrophy Foundation, KwaZulu-Natal Branch for
the love and support they have given me in the past.
Kind regards
Veronique Conner
THANK YOU! THANK YOU!
THANK YOU!!
My sincere thanks for the donation of my bath hoist.
This has made the world of difference to my life.
Since I joined the Foundation I have received so much
support and reassurance concerning my illness. I am
now able to manage my lifestyle a whole lot better.
My sincere appreciation goes to the executive committee,
staff and everybody involved with improving
the lives of people with muscular dystrophy.
God’s richest blessings
Cathy Khoon Khoon
54

JHB, CPT, DBN, PE, RIVONIA & PTA 0860 23 66 24 www.cemobility.co.za