September 2013 Newsletter - Huntington's Disease Society of America

HUNTINGTON’S DISEASE SOCIETY OF AMERICA
LOS ANGELES CHAPTER NEWSLETTER
ISSUE 5 • SEPTEMBER 2013
LETTER FROM THE PRESIDENT
BY DEANNA DENARO
PRESIDENT, HDSA-LOS ANGELES
Board of Directors
DeAnna DeNaro
President
Luis Tovar
Vice President
Adriana Venegas
Treasurer
Taryn Reneau
Secretary
Members
Steve Seekins
Peter Lawson
Curtis Thiede
Joe Eddy
Amy O’Keefe
Rachel Brown
David Tovar
HDSA LA Chapter
9663 Santa Monica Blvd,
Suite 537,
Beverly Hills, CA 90212
We are now half way through the 2013
year and progress is being made on both
the local and National level. This years’
HDSA Convention held in Jacksonville
Florida featured several keynote
speakers including Dr. Michael Hayden,
whose moving presentation on HD
research and his personal contributions
to HD left many with tears of hope! I am
excited to report that HDSA-LA won our
second award for “Best New Fundraising
Event” for our 2012 Hop for HD event!
This year the Los Angeles Chapter
received a Southern California Youth
Scholarship grant that enabled us to send
four young adults to attend the HDSA
convention. For those who had never
been able to attend expressed their
deep appreciation for the opportunity.
Please visit www.hdsa.org to view
recorded sessions and power point
presentations of the convention.
I am pleased to report on our Chapters
fundraising efforts thus far. The Hop
for HD event was great fun with over
150 attendees who danced to 50-
60’s music performed by a live band,
munched on awesome food provided
by our Sponsor, Ruby’s, and participated
in a dance contest and much more fun!
Horseshoes for HD an event put on by a
very dedicated group of individuals held
every year in Hermosa Beach brought in
5K!
This year’s Ron Huff Charity Golf
Tournament contributed approximately
10K in the fight against HD!! Lastly, we
would like to thank the organizers of
the Iron Man Contest, held in Hermosa
Beach for making HD one of their
charities donating 3K to HDSA for a
second year! We are looking forward
to seeing you all at 5K on November 2,
2013 at Griffith Park! Thank you to all of
you have donated your time and efforts
in making this year’s fundraising efforts
such a success.
For additional information on how you
can help please visit our Chapter Web
site: hdsala.org or contact me directly if
you have a question or idea that we can
share at deannayeh@gmail.com
WWW.HDSA.ORG/LACHAPTER

HDSA LOS ANGELES
Spotlight: Daniel Tovar
SHARE YOUR HD STORY
We want to share your HD
story with others and hope
you will find inspiration in
each one. Each newsletter
issue will include a new
HD family Story. Those of us
who have family members
or friends with Huntington’s
disease have a story to tell. If
you wish to share your story
please contact DeAnna DeNaro
at deannayeh@gmail.com
Huntington’s Disease has always been a
part of who I am. My name is David Tovar
and ever since I was a kid I have known
the reality that is Huntington’s Disease.
HD was all around me growing up as
my uncle, two aunts and mother are all
positive and I am at risk. This certainty
that people are affected by HD has been
a present part of my life since I was a
kid and it continues to be a focal point.
After attending my first HDSA National
Convention in 1999 I understood that
I was not alone in the fight against HD.
There were people from around the
county going through what I was and
there are kids just like me. I continued
going to conventions and made friends
with the youth, we were a small group
in the beginning, but soon became what
is known as the National Youth Alliance
(NYA).
Going from a shy kid who wouldn’t
participate in events to leading events,
I have grown up in the NYA. It is an
organization that has helped me learn
and cope with our reality. These guys
have become my extended family around
the nation and the world. I have been
able to travel all around the United States
as well as internationally to help talk
about HD and the NYA. I represented the
NYA at the 2011 Huntington’s Disease
World Congress in Melbourne Australia
and talked about how our organization
was formed and how others can do the
same. The membership of the NYA has
grown tremendously from a couple of
kids sitting around in the hotel lobby to
now having its own fully dedicated day at
the HDSA National Convention.
I strive to be more involved within the
community, it is something I grew up in
and it is what I am dedicated to. As a kid
I thought I wanted to be a researcher to
find a cure, but math and biology were
not for me. So I have decided to go on
the other side of things, I figured that
if I cannot find the cure I can help the
people who are finding it by getting more
people involved and active. I hope that
my involvement can help spur people to
action so that we can find a cure.
Upcoming Support Group Schedule
For those interested in participating in any of our support
group sessions please take note of the schedule. We are so
pleased to have a wonderful support team lead by Dr. Arik
Johnson. All meetings are held on Sunday from 3-5pm at
UCLA. For additional information or if you would like to
get on the distribution list, email arik.johnson@mac.com.
Parking vouchers are available upon request.
Sunday, September 22
Sunday, October 20
Sunday, November 17
Sunday, December 15
For additional information on these events please visit our Chapter Web site: hdsala.org

WWW.FACEBOOK.COM/HDSALOSANGELES
ISSUE 0 • MONTH
HD RESEARCH PROGRESS
Thanks to all of the hard work of the entire HD community working with
HDSA, significant progress has taken place during the last 10 years providing
hope and encouragement for us to continue with our fundraising, advocacy,
and family support efforts. The following data has been compiled by HDSA’s
Director of Medical and Scientific Affairs, Dr. George Yorhling.
“We need to spread the
word because for less
than one dollar anyone
anywhere can support
a cure, can support
those with Huntington’s
Disease, and can support
a better future. My hope
is that everyone will.”
CURE on iTunes:
http://itunes.apple.com/
us/album/cure-single/
id526442363?wdId=32800CURE
CDBaby:
http://www.cdbaby.com/cd/tarynreneau2
HDSA LOS ANGELES CHAPTER 8TH ANNUAL
5K WALK
NOVEMBER 2, 2013
GRIFFITH PARK
Sign up today!
www.hdsa.org/thwlosangeles
8AM-12PM

HDSA CENTER OF EXCELLENCE UPDATE - FALL, 2013: FOCUS ON RESEARCH
BY ARIK JOHNSON, PSYD
The Center of Excellence at UCLA is a multidisciplinary
clinic that offers numerous services to people living with
HD in Los Angeles and southern California. We provide
clinical care, address social service needs, and educational
people in the community about HD. The Center is also
active in HD research, with a number of studies going on
currently and several exciting prospects in the near future.
Being involved in research is an opportunity that so many
people living with HD chose to take when visiting our
team at the Center. In order for the research community
to develop new treatments and work towards a cure for
this disease, it is vital that people participate in the studies
available. It is important to talk to your doctor, as well
as family and friends, about studies as there are a lot of
factors to consider before signing up for research.
At this time, the main study going on at UCLA is ENROLL-
HD. This study is an international effort and the largest
observational study to date for people living with HD. By
collecting information and biological samples from people
all over the world, this study is compiling the largest set of
clinical data for HD. This is exciting because it makes even
more data available for other researchers to use in their
own studies and paves the way for future clinical trials and
new tools in understanding and treating HD. At this time,
UCLA is ranked fourth in the United States for enrollment
and we are encouraging everyone in our clinic to consider
this study!
HDSA CENTER OF EXCELLENCE NEWS
Another study currently taking place is looking at
measuring quality of life (QoL) for people with HD. This is
another observational study and involves a questionnaire
and health related assessment specific to HD. This will
develop a measure that will be useful in future treatment
trials as the desired outcome may be to improve the QoL
of people living with this disease, as we are hoping to see
in proposed drug and interventional trials.
While we do not have any active drug trials taking place
at this time, we are gearing up to be involved in several
studies in the near future. As we learned at the HDSA
National Convention held in Jacksonville, FL, this past
June, there are a lot of exciting prospects on the horizon!
In fact, our colleagues at UC Davis are taking the first step
towards a stem cell treatment trial by launching the PRE-
CELL observational study which will lead to the active trial
in the next 18 to 24 months. While that might seem like
a long time, in the world of HD research that is so much
closer than we have ever been and I think everyone is
anxiously waiting to see how this study unfolds!
If you are interested in participating in any of the studies at
UCLA, please feel free to contact our office! You can also
stay up to date by looking at the HDSA website at www.
hdsa.org and checking out the “research” tab on the home
page. There is a lot that is happening in HD research and
we are all excited about what is coming up in the near
future.
CALLING ALL VOLUNTEERS!
Hello to our HD community: At this time the Los Angeles Chapter is looking for volunteers for our 2014 Hop for HD.
The Chapter won its 2nd award at the convention this year. The Hop is a great family fun event to attend. We
need YOUR help to make it bigger and better. We are looking for people who would like to join our growing Hop
committee to help with event planning, securing auction items, and day of set up. We welcome you and your
talents to join us create another amazing Hop for HD benefiting those afflicted with Huntington’s disease.
For further information on how you can help contact
DeAnna DeNaro at deannayeh@gmail.com
President, Los Angeles Chapter