BRIDGES OF HOPE - Huntington's Disease Society of America

B R I D G E S O F H O P E
V O L U M E 1 I S S U E 3 7
February 2012
W O R D S O F H O P E :
“ W H E N Y O U A R E F A C E T O F A C E W I T H A D I F F I C U L T Y ,
Y O U A R E U P A G A I N S T A D I S C O V E R Y ”
L O R D K E L V I N
P R E S I D E N T ’ S L E T T E R . . .
Page 1: President’s
Letter
Page 2:
Social Worker
Page 3: In Loving
Memory
Page 4: Spotlight on a
Cure Audition
Page 5: Spotlight on a
Cure Fundraiser
Page 6: Teleconference
Support Group, Camp, In
Loving Memory
Page 7: HD Fundraisers
Page 8: Caregivers Corner,
Regional Walk Fundraiser
Page 9: Wheelchair ,
Papergator, Hoop-a-thon
Page 10: Caregivers
Corner - Stinky Scary
Page 11: Renny’s
Journey Home
Page 12: In Loving
Memory
Page 13: Fundraising
Page 14, 15: Support
Group Meetings,
Page 15: SS Disability
HDSA Michigan Chapter 1174 James Savage Road, Midland MI 48640. The Help
line Number is 1-800-909-0073, the Chapter’s business number is 989-832-4170,
and the fax number is 989-832-4171, E-Mail: hdsami@att.net, and the web site
address is www.hdsa.org/mi
A new year has arrived and I am sure everyone is quite busy.
In September 2011 we held our Michigan Chapter State Conference.
We had some very good presentations: Dr. John Kamholz;
Professor of Neurology Wayne State School of Medicine The “Role of
the Mitochondria in Huntington’s Disease. Dr. Mary Morreale; M.D.
Wayne State School of Medicine, Psychological and Psychiatric Issues
with Huntington’s Disease. Shawna Feely; MS CGC, Genetic Counselor
Asst. Prof. of Neurology & Lindsey Miller; MS, Genetic Counselor,
Asst. Prof. of Neurology, Kelly Kennelly Genetic Counselor, all at
Wayne State University “Myths of Huntington’s Disease”. Danny
Berry; LLMSW HDSA Michigan Chapter, “Clinical Trials for Huntington’s
Disease”. Janet Stevenson - “Memories of My Mom: A Families Journey
with HD”. Peter McFadden Royal Oak Support Group, HD Awareness
, “Huntington’s Disease Advocacy”. Larry Slabosz; Woodbury
Financial Services, “New Chronic Illness/Long Term Care Riders”.
Dave Stickles; President HDSA Michigan Chapter, discussed the HDSA
Michigan Chapter and the many resources it has to offer. Thank you to
all the speakers and vendors who made this and informative and successful
conference.
In March 2012 Krissi Putansu from the Royal Oak Support Group
and friends will be putting on another wonderful Talent Show Fundraiser
that not only raised funds for HD but also will be around 3
hours of excellent entertainment. See the flyer later in the newsletter
for more information.
The National HDSA Meeting is coming up in Las Vegas, NV, June
7-10, 2012. See the National HDSA web site www.hdsa.org for further
details and attend if you can. For First time attendees Lundbeck is offering
some scholarships, so if you haven’t attended a National and
are considering it, please look for the application on the National Offices
web site www.hdsa.org. Contact the chapter office if you have
difficulties finding it. The earlier you apply the better...Dave Stickles

“Bridges of Hope” HDSA Michigan Chapter -2-
Hello everyone,
Michigan Chapter Social Worker
I hope everyone’s holiday was filled with joy and happiness and everyone got at least one gift
they wanted (LOL). During the last couple of months I have been getting some calls on the
difference between Social Security Disability Insurance (SSDI) and Supplemental Security
Income (SSI). I have found some information that could help answer some of your
questions. Below are the differences between these two important entities:
Social Security Disability Insurance (SSDI):http://www.socialsecurity.gov/
pubs/10029.html
This program is financed with Social Security taxes paid by workers, employers, and selfemployed
persons.
The worker will get Medicare coverage automatically after receiving disability
benefits for two years.
To be eligible for a Social Security benefit, the worker must earn sufficient credits based on taxable
work to be "insured" for Social Security purposes.
Disability benefits are payable to:
blind or disabled workers
their children
widow(er)s
adults disabled since childhood
The amount of the monthly disability benefit is based on the Social Security earnings record of the insured
worker.
See Understanding the Benefits for a complete explanation SSDI: http://www.socialsecurity.gov/pubs/10024.html
Supplemental Security Income (SSI) :http://www.socialsecurity.gov/pubs/11000.html
This program is financed through general revenues from taxes, meaning benefits are not based on your prior work
history.
In most states, beneficiaries will automatically be eligible for Medicaid.
SSI benefits are payable to:
individuals age 65 or older
adults who are disabled or blind
children who are disabled or blind
Eligibility requirements:
have limited income and resources
meet the living arrangement requirements
a U.S. citizen or national, or in one of certain categories of aliens.
The monthly payment varies up to the maximum federal benefit rate, which may be supplemented by
the state.
See Understanding Supplemental Security Income for a complete explanation of SSI:http://www.socialsecurity.gov/
ssi/text-understanding-ssi.htm
If you have any other questions and need help filling out the paperwork and please feel free to call the support line
at 1-800-909-0073 or call me at 810-358-7875. I will be happy to answer any questions you have about SSI and
SSDI. I know this is sometimes an arduous experience and Dave and I are ready to help you through this. Also, if
no one answers the helpline please leave a message and we will get back with you in no less than 48 hours.
Thank you, Danny Berry LLMSW/Family and Service Coordinator, 1-800-909-0073

“Bridges of Hope” HDSA Michigan Chapter -3-
Robert (Bob) W. Lentner, Sr., 88, died early Wednesday morning, July 13, 2011 at Clare Bridge of Midland.
Bob chose early retirement to care for his wife Betty, who had suffered with Huntington’s disease
for 15 years. After her death, Bob began his volunteer work with the Michigan Chapter of the Huntington’s
Disease Society of America; presiding several years as President. It was there he met his current wife,
Ruth (O’Donnell) Tetreau, and together they received several awards of recognition for their diligent work
in establishing local support groups, forming the Mid-Michigan Chapter of HDSA, later merging this with
the Southeast Michigan Chapter of HDSA into what is now the current Michigan Chapter of HDSA that
helped countless people over the years. Bob you are missed by all your HD family !!!
James Garbern, M.D., Ph.D., professor of Neurology at the University of
Rochester School of Medicine and a former associate professor in the
Wayne State University School of Medicine’s Department of Neurology
and Center for Molecular Medicine and Genetics, died Nov. 10 in Rochester,
New York. He was 58.
Dr. Garbern was a member of the WSU School of Medicine faculty for
more than 15 years before joining the University of Rochester as professor
of Neurology and chief of the Division of Neurogenetics about a
year ago. While he was at Wayne State, he established the Division of
Neurogenetics, where he evaluated patients with inherited diseases of
the nervous system, including Huntington Disease, Neurofibromatosis,
Spinocerebellar ataxia syndromes and Fabry disease. The Neurogenetics
Division grew steadily while he was at Wayne State, eventually including
two genetic counselors to assist him with the growing patient
load.
“Jim was an outstanding diagnostician and caring physician, and his
fund of neurogenetic knowledge was legendary,” said colleague John
Kamholz, M.D., Ph.D., professor of WSU Neurology and the Center for
Molecular Medicine and Genetics, and director of the Neurogenetics
Program Dr. Garbern founded. “If there were a mutation to be identified,
Jim would find it. He also regularly attended local, regional and
international support group meetings for patients with neurogenetic
conditions, and was known by many of his patients on a first-name basis. As related by the husband of one of his
Huntington Disease patients, ‘Jim was always reachable for consultation by email, even from as far away as Saudi
Arabia.’” Jim, you will also be missed by your HD family !!!

“Bridges of Hope” HDSA Michigan Chapter -4-

“Bridges of Hope” HDSA Michigan Chapter -5-

“Bridges of Hope” HDSA Michigan Chapter -6-
Teleconference Caregivers Support Group
A Teleconference Caregivers Support Group will start again in July and is being hosted by Christine Salewsky.
The meetings are on the last Sunday of the month at 7:00 PM. It will not replace any of the existing Support
Groups.
For some of you that are Caregivers it becomes harder, and you become more isolated from other Caregivers
in the present Support Groups because many of you are not able to come to one of these existing Support
Group Meetings.
To help this situation we started a Conference Call for Caregivers that are unable to attend a meeting in person.
The meetings have been taking place on the last Sunday of the month at 7:00 PM. Again it will not replace
any of the existing Support Groups.
Please contact the Chapter Office on the 1-800-909-0073 (Toll Free) number if you would like to be in on this
conference call. Someone will get back to you and give you the information on how to call into the meetings.
Call Christine at 715-938-5902, or the Chapter Office at 1-800-909-0073 for further information.
______________________________________________________________________________________
HD Circle of Friends Camp
The Michigan Chapter will once again be sponsoring a circle of friends camp at Camp Fish
Tales in Pinconning Michigan. This is a camp that specializes in running summer camp programs
for people with various disabilities. It will tentatively be the week of August 5-10.
If you have a loved one that is in the mid-stages of HD and still ambulatory and you think
they would enjoy a week of camp experience, please call the chapter helpline at 1-800-909
-0073 or email us at hdsami@att.net, and we will send you an application packet. This
week of camp also give the caregiver a week of respite, and time for themselves of to catch
up on things that are difficult to do while care giving for someone full time. Application will
be sent out in June, but wanted to get people thinking about it…………. Dave Stickles
______________________________________________________________________________________
Kathleen Kelly Jade Edward passed away January 12, 2012, from Juvenile HD, she was
9 years old. She is the little girl who’s smile won the hearts of the world back in 2010
when her grandmothers family was harassed by a neighbor in Trenton Michigan. Her
mother Laura had also lost her battle with JHD in 2009 at the age of 24. Kathleen has been
reunited with her mother. We will miss her beautiful smile, but will forever have it in our
hearts. Her smile spread JHD/HD awareness around the world !!!

“Bridges of Hope” HDSA Michigan Chapter -7-
HD Fundraisers
In second half of 2011 there were several outstanding fundraiser to help support the Michigan Chapter
in its mission to help our HD families, or raise funds for HD research.
In July the Mikula family, and Four Seasons Yard & Sports Equipment, Inc. sponsored the Sta-Bil Great
Lakes Summer National Lawnmower Races for HD in Sparta Michigan. This is an outstanding family
even filled with fun. It raised $15,765 for HD research. This was only possible through the hard work of
the Mikula family and their friends. A big thank you to all those that supported this event in some way.
In August the Royal Oak Support Group put on the 8th Annual Royal Oak Bowl for HD Fundraiser. This is
always a fun night of bowling with some awesome giveaway gift baskets and door prizes for those attending.
This event raised $5626 for the Michigan Chapter. A Big Thank you to Krissi Putansu and Karen Calcaterra,
and their family and friends who put in so much work to make this a fun event for all.
In September the Royal Oak Support Group put on the 17th Annual Royal Oak Walk for HD in Center Line
Michigan. It is also a Memory walk as well as a Team Hope Walk. This event is a time for HD families and
friends to have an afternoon with a fun family picnic and get to renew friendships, meet new HD families,
and share memories of their loved ones. The afternoon wouldn’t be complete without some outstanding
food prepared by all the family cooks, and some hamburgers and Hotdogs cooked by master chef Jeff Wieske.
We had around 150 people attend, and this event raised $11,793 for HD research. Linda Carlesimo
Powell and her family raised about half of this. A Big thank you to Peter McFadden, Karen Calcaterra,
Krissi Putansu, Jeff Wieske, Linda Carlesimo Powell and her family, and all the other HD families
and friends that made this a huge success.
The St Mary’s Youth Ministry of St Claire, Michigan had a 16 hour Rock-a-thon (rocking in rocking chairs)
in July as a fundraiser, raising just over $3600 for the Juvenile HD Initiative. They heard about the young
girl Kathleen with JHD who was being bullied by a neighbor and picked HD as their charity. They are a
group that raises awareness on social justice issues. A big thank you to Theresa Barrons’ and her youth
group.
We were in the running to Win a Toyota Sienna Van from Toyota, in their 100 Cars for Good promotion on
Facebook, but did not win the van, we did receive $1000 from Toyota as a runner up. Thank you Toyota.
We also held on State Licensed Texas Hold’em in September 2011 in Sterling Heights Michigan that
raised $1,912 for the Michigan Chapter. We had 3 others scheduled in late 2011, but do to remodeling
at the facility they did not take place. We plan on doing 4 in 2012 if all goes well with the facility, the first
one scheduled in March.

“Bridges of Hope” HDSA Michigan Chapter -8-
The Michigan Chapter's Patient and Family Services Committee presents The Caregiver's Corner.
WHO CARES ??? WE DO !!! THEY DO !!! READ ON !!!
Friends, we will print caregiver's stories that will show you that "THEY DO CARE".
You will agree that ""THEY DO INDEED CARE" and are doing fantastic jobs as Caregivers. Our aim in future Newsletters
is to bring you stories from people who really care and are doing marvelous jobs as Caregivers for their loved
ones.
Please call us, e-mail us, fax us, or write us with your stories so we can publish them in future Newsletters. 800-
909-0073, hdsami@att.net, fax 989-832-4170. HDSA Michigan Chapter, 1174 James Savage Road, Midland MI
48640-5651
—————————————————————————————————————————————————————————————————-
This is going to be a brief write up on my sister Mary Burgan. Mary is one of the third generation with
Huntington’s Disease, that I am aware of. Grandfather, to youngest daughter to my sister Mary. Mary is
one of 25 grandkids, my mother was one of six girls and my grandfather was one of three boys. The number
with HD in my family has been many. It spread like wild fire out of control, while I was growing up.
Mary was Grandma Smurf’s Princess. When it came to making sure
her mom and little sister were safe, she was there for them. Now I (her
little sister) am returning the favor. I knew that my sis had HD before
she got tested for it. That didn’t stop Mary from having a son. I spent
time helping Mary at home, so she could be there for her son, Shaun.
It was frustrating at times, but I made videos and took lots of photo’s
for us to remember all the fun we had being together. I love my sister
and am thankful she is in my life.
Mary is now in a nursing home, I go to the home once a week to see
her. At times I may have her son with me or it’s just me.
For me right now, I am living with our older brother, whom also
has the Huntington’s Disease.
Thanks for letting me share about my family, Pamela Attleberger.
Mary Burgen
——————————————————————————————————————————————————————————————————--
A Great Lakes Region Team Hope Walk for HD will be Sunday, May 20th, 2012
at the Ray & Joan Kroc Center 2500 S. Division Ave., Grand Rapids MI 49507.
Registration opens at 11:30am and the walk will begin at 12:15pm. After the
walk there will be lunch, music, and an over-the-top raffle. People can register
online or make donations at www.firstgiving.com/hdsa-greatlakes/teamhope.
People can contact Chelsea Boers if they need additional information at 269-
370-3997. Funds generated by this walk go to support HDSA’s fight to improve
the lives of people affected by HD and their families. Team Hope Walks
are being organized in Battle Creek, Muskegon, and Marquette, Michigan for the
summer of 2012. Please call Deb Boyd, HDSA Regional Development Director at
269-629-5452 or e-mail dboyd@hdsa.org for more information.

“Bridges of Hope” HDSA Michigan Chapter -9-
Electric Wheelchair Donated to the Michigan
Chapter in Memory of Alex Caverly
Pauline Caverly of Omer has donated an Invacare Electric Wheelchair
in memory of her late husband Alex who passed away from
complication of Huntington’s Disease. This wheelchair is available
for LOAN to an HD Person on a first come first served basis. But in
order to qualify there are a few criteria that should be met.
1) The HD person should have good cognitive ability and fairly good
hand coordination as this wheelchair can move quite fast, or an attending
person should always be the one to operate it.
2) The HD person should have minimal temper outburst as the
speed of the wheelchair can present a hazard to those around the
person operating the wheelchair.
3) If the wheelchair is to be transported outside the home then a
van with a lift would be necessary as the wheelchair is extremely
heavy and would require 2-3 adults to lift it. Because it is electric it
should not be transported on the outside of a vehicle as rain could
damage the chair. A wheel chair ramp would also be necessary for
moving it outside the home.
We also have a many other items in the office that can be loaned out.
If you feel your HD loved one could use this chair, or have other needs please call the Michigan Chapter
help line at 1-800-909-0073 and see if we have the item to loan.
_______________________________________________________________________________________
Paper Recycling Fundraiser—PaperGator
Raising Money for
Huntington’s Disease Society of America
Michigan Chapter
PaperGator Bin Located at
Four Seasons Yard and Sports Equipment
5426 Alpine Avenue
Comstock Park, MI 49321
What can go in the bins: Newsprint, Catalogs, Magazines, Junk Mail, Phone Books, Office/School Paper
What can’t go in the bins: Plastic, Metal, Trash, Glass, Cardboard
_______________________________________________________________________________________
A Hoop-a-thon for HD is tentatively scheduled for Saturday, May 19, 2012. in
Grosse Pointe Michigan. We are currently confirming a location, and we will post
an update on our web page, as well as the Michigan Chapter web site and Facebook
page as information becomes available. We will be looking for Hoop-a-thon
participants, as well as sponsors, and anyone that is willing to donate money,
prizes, or their time :) We are incredibly grateful in advance for your support and
love you all dearly. - Rachel, Bridget & Amy Hathaway

Stinky and Scary
“Bridges of Hope” HDSA Michigan Chapter -10-
“I don’t want to go to Lexy’s. It’s stinky,” my 4-year-old daughter said last Sunday, as we were loading up the car
to drive 25 minutes to my sister’s assisted living facility just north of Ypsilanti. I was not sure how to respond.
My sister, Alexis, who has Huntington’s Disease, moved to Ann Arbor with my mother in October of 2008. For
the better part of 3 years, Marina hadn’t seen anything wrong with Lexy. It was comforting to me since I missed
my sister as she had been. I struggled to accept the changes and just enjoy Lexy as she is. Marina has taught
me to accept Huntington’s better than I could have on my own. But, now as Marina approaches 5, she is more
aware of her own appearance and behavior, and of others.
Lexy lives in a small room and shared bath in a one story building that can accommodate maybe 24 adults and
at present has about 18. At 50, she is the youngest by decades. Many of the other residents have various
forms of dementia. It is often stinky. Most of the residents wear adult diapers. When we visit Lexy, there is almost
always someone in the TV room whose diaper is soiled.
“It is a little stinky,” I concede. “I don’t want to go.” Marina repeated.
I wrestled my one –year-old son, Jay, into his fleece suit, and tried to think what to say next.
I don’t like visiting Lexy’s home either. I don’t like the stink. I don’t like thinking about the future. So far, Lexy
still does most of her own toileting, but in the last couple weeks, she has started to use a wheelchair more, and
has had more toileting accidents. It is only a matter of time before she’s in diapers everyday too.
“Lexy loves you and she likes to see you.” “She’s stinky.”
“Sometimes she’s stinky, but we love her anyway.” This satisfied Marina and we got in the car. I brought snacks
to eat at Lexy’s. Food gives us all something to do together. An hour long visit always seems too short, and way
too long, with Jay climbing all over the furniture or pulling objects off the shelves; and Marina wanting someone
to read with her, draw with her, play with her. The snacks keep the kids out of trouble and quiet for 20 minutes,
and Lexy and I can chat. Or rather I chat. Lexy is still in there but her response time keeps getting longer and
longer. Conversation is torturous. But, with a big effort, we can usually exchange at least one thought, idea or
event. Today, however, Jay’s crying for his snack in the car. And once he gets a banana, Marina wants one too.
As we approached the front door, Marina said, “I’m scared.” I felt like crying. I missed Marina’s days of innocence
when she ran to the front door eager to jump on Lexy’s bed and chase the resident cat down the hall. “I
am scared too,” I replied.
The visit was fine. Lexy was glad to see us. She left the TV room pushing her wheelchair in front of her and sat
in her room. Jay pulled every DVD Lexy has off the shelf. Marina used a ballpoint pen to draw on blank cards
she found in Lexy’s TV stand. She drew on herself and me.
Lexy and I exchanged a couple sentences. After a lot of repetition on her part, and some guess work on my part,
I understood that she felt like the wheelchair helped her, prevented the injuries she had been getting from falling.
But, she couldn’t move the chair on her own, and didn’t like asking for help. I told her that I’d called her
doctor for an occupational therapy referral to help her use the wheelchair better, and that mom wanted the
therapist to suggest a more Lexy friendly wheelchair.
We all watched part of “That Touch of Mink,” and then we left.
On the way home, Marina reported that Lexy had said Marina could draw on her too, but Marina had been too
scared to do so. “She is drooly,” Marina said. “Lexy’s face doesn’t look like other people’s, does it?” I said.
“No,” Marina agreed. “That is because she’s sick,” I said, “That’s what makes her face look drooly, but she’s
always glad to see you even if her face doesn’t smile.” “Can I wait and do bath tomorrow?” Marina asked, wanting
to keep her body art another day.“Okay,” I said, and I realized Marina is still teaching me about living with
Huntington’s disease. It is scary and stinky, and it is okay to say that. In fact, saying that up front, made this
visit better than a lot of recent visits. I want so much for my sister not to be sick that I am always disappointed
that she is. I am mad that I can’t fix it, and sad that she isn’t the big sister she once was.
Marina still sees Lexy as she is, right now. She was scared and she said so, and now it is over. I spend way too
much time missing Lexy from the past or worrying about her future. I can’t cure her, so better to focus on what I
can do like getting her OT for the wheelchair.
“I think I’ll wait and have my bath tomorrow too,” I said, admiring the long, thin princess on my left forearm. “Oh
good,” Marina said. And then we were home.
Catherine Zudak

Renny’s Journey Home
“Bridges of Hope” HDSA Michigan Chapter -11-
By Krissi Putansu, Royal Oak Support Group Leader, (586) 822-1730 or krissilynn18@hotmail.com
Renny Rock Putansu was born on April 24, 2011, Easter
Sunday. Renny came into the world over three months before
his due date because he could not wait to get a jump
start on life! Even though his first ten weeks were spent in
the NICU (neonatal intensive care unit) as a preemie at 2
pounds 12 ounces, he is a fighter and came home to us earlier
than expected on July 1, 2011. Renny probably doesn’t
realize that he had an interesting and unique journey long
before the early birth scare.
My husband, Rocky and I started the IVF (In Vitro Fertilization)
process in early 2010. We were extremely hopeful;
unfortunately it was not successful. We are among a small,
although growing,
percentage of people
who are utilizing IVF not because of infertility but using IVF and genetics together
in order to prevent genetic diseases, such as Huntington’s Disease.
There are only two locations in Metro Detroit that offer these procedures
at this time. It is a risk, expensive and requires a lot of work in coordinating
with the IVF clinic and genetics lab. It is somewhat painful, time consuming
as well as financially and emotionally draining. Yet the ultimate results
are completely worth it!
After taking some time to heal, physically and emotionally, from the unsuccessful
IVF attempt, we finally tried again in late 2010. There was a
“discount” applied because the clinic already had much of the core information
they needed from the first attempt. We decided to go with a more expensive
genetics lab the second time around and it seemed to be a wise
choice because in November 2010, I found out I was pregnant! It was a relief
to know that my child would not have Huntington’s Disease; I could actually
relax and begin planning for our new baby to arrive.
The ultrasounds and doctor’s appointments were many, but each one
held excitement for the future. It was complete shock when I delivered
over three months early, but I am elated to say that all turned out just
fine because we have a happy and healthy son, Renny who is a miracle
to us in many ways.
There are so many possibilities with the IVF and genetics combination.
If someone is at-risk for HD (or many other genetic diseases), your
status is not even required. This procedure can be done without becoming
aware of your status, which is beneficial for those who have made
that exact choice. Even though this process is extremely challenging, I
would be happy to talk with anyone who is considering it so we can discuss
the details, difficulties, approximate costs, and the hope for an HD-
FREE future! I realize this procedure is not for everyone, but I had to
spread the word about this available option to our close community.

“Bridges of Hope” HDSA Michigan Chapter -12-
Diane Allen
Pauline Marie Bryll
Bradley Clark
James Edward Diebler
Neta Kay Diebler
Kathleen Kelly Jade Edward
Dr. James Garbern
Donald Grimm Sr.
Vicki Hogston
Faith Holty
Patricia Kingery
Dona Joyce Lawrence
Robert (Bob) Lentner
Bernard (Ben) McDonnell Sr.
Mary McDonnell
Maggie Mullins
Betty Jean Noel
To Those I Love and Those Who Love Me
(Author Unknown)
When I am gone, release me, let me go,
I have so many things to see and do,
You mustn't tie yourself to me with tears.
Be happy that we had so many years.
I gave you my love, You can only guess,
How much you gave to me in happiness.
I thank you for the love you each have shown,
But now it is time I travel alone.
So grieve a while for if grieve you must,
then let your grief be, comforted by trust.
It's only for awhile that we must part,
so bless the memories within your heart.
I won't be far away, for life goes on.
So if you need me, call and I will come.
Though you can't see or touch me, I'll be near.
And if you listen with your heart, you'll hear,
All of my love around you, soft and clear.
And then, when you must come this way alone,
I'll greet you with a smile, and say,.......
"Welcome Home"
Dorothy Mila Patterson
Cynthia (McFadden) Pelletier
Deborah Kaye Skalla
LouAnn Slezak
Kathy Snyder

“Bridges of Hope” HDSA Michigan Chapter -13-
It’s true...fundraising is not always easy.
“We’re all busy”…”time is hard to find”…”money is tight”…”I’m not very organized”…”I don’t like
talking to strangers”…”My family and friends get tired of me asking for help”…
These are all the things we think when we hear the word fundraising.
Dispel those myths! Here are some easy ways to help raise the funds that so dearly help HD
families, research, and education!
Donate a portion of your profits from your small business!
Donate money from a garage sale
Collect pop cans from your neighborhood for a month! (and save those pop tabs too!)
Have a car wash! Or a Dog wash! Just need a hose, some soap and a sign! And kids can
help too!
Remember, you don’t always have to think BIG!
Every little bit counts!
Donations can be made securely online by going to www.firstgiving.com/hdsami
Please help to serve all Huntington’s Disease families better by sending your most generous
contribution possible at this time.
YOU MAKE THE DIFFERENCE!
ENCLOSE
IN
ENVELOPE
AND MAIL
TODAY
TO: HDSA Michigan Chapter
1174 James Savage Road
Midland, MI 48640-5651
ENCLOSURE: Check or money order made payable to HDSA Michigan Chapter
____ $15 Individual Annual Membership
____ $25 Family Annual Membership
____ $___ Additional gift amount to help in the fight against HD
Donations can be made securely online by going to www.firstgiving.com/hdsami

“Bridges of Hope” HDSA Michigan Chapter -14-
HDSA MICHIGAN SUPPORT GROUP MEETINGS
AREA WHEN WHERE CONTACT
Adrian Sunday March 4th, 2012
7:00 PM (possibly 1st Sunday
monthly after that, check our
web site)
Lynwood Manor,
730 Kimole Lane,
Adrian MI 49221
Myndi Milliken
517-263-6771 ext. 436
Grand Rapids & Western
MI
Greater Genesee
County Area
Kalamazoo
Fourth Wednesday Quarterly
6:30-8:30 PM
January, April, July, October
1st Monday
7:00 pm
Quarterly Meetings Fourth
Tuesday 7:00 pm (Check with
Coordinator for Months)
St. Mary's Neuroscience Ctr
Hauenstein 1 Community
Education Confs Room
220 Cherry Street SE
Grand Rapids MI 49503
Woodhaven Senior Community
G-5201 Woodhaven Ct
Flint MI 48532
First Congregational
Church
129 S. Park Street
Kalamazoo MI 49007
Dave
800-909-0073
Jean or Barb
810-659-4548
Sara
269-381-7725
Lansing Currently Inactive 800-909-0073
Living Positive
Support Group
Grand Rapids -Ada
2nd Thursday
6:30-8:30 PM
(For Gene Positive and at Risk
Individuals)
Psychotherapy and
Consultation Offices
967 Spaulding SE, Suite E
Ada MI 49301
Kathy Delp
at
616-581-3085
Kath6613@aol.com
Macomb County
Caregivers Group
2nd Tuesday
7:30 pm
4571 Reflections Drive
Sterling Heights
Deanna (Dee)
586-997-3089
Menominee
Currently Inactive
For Local Information Call
Chris 715-938-5902
Mt. Pleasant
2nd Tuesday 7:00 pm
No Meetings January,
February, or March
Coldwell Bankers,
304 East Broadway,
Mt. Pleasant MI 48858
Ann 989-561-5023
Dave 989-496-3273
Royal Oak
3rd Saturday 1-3PM
April 21, 2012
July 21, 2012
November 17, 2012
Wm. Beaumont Hospital
Administration Building
Conference Room A/B/C
3601 West 13 Mile Rd.
Karen 586-792-6579
Krissi 586-822-1730
Taylor & Downriver
Currently Inactive - if you
are interested in attending
please contact Dennis so
we can determine interest
TBD
Taylor MI
Dennis 313-292-4717
Tri-Cities Area
1st Thursday
7:00 pm
Saginaw Township Fire
Dept. Station No. 3
153 N. Center Rd
Saginaw MI
Ruth 989-835-9933
Dave 989-496-3273
Traverse City Currently Inactive For Local Information Call
Karlene
231-623-2233
Office 1-800-909-0073

“Bridges of Hope” HDSA Michigan Chapter -15-
Adrian—New support group starting March 4th, 2012 at 7:00 PM, 1st Sunday Monthly.
Greater Genesee County—1st Monday of the month, except 2nd Monday in September
(10th) due to Labor Day
July & August No meeting, July or August Possible Family Picnic at the Reddaway’s
Living Positive Support Group— 2nd Thursday from 6:30 –8:30
Menominee — Inactive
Mt. Pleasant - 2nd Tuesday of the Month, No January, February or March Meetings
Royal Oak— April 21,2012—Massage / relaxation techniques, July 21,2012—Psychologyst,
November 17, 2012—Neurologist (1-3 pm)
Traverse-City— Inactive
HDSA MICHIGAN SUPPORT GROUP MEETINGS
Tri-City - 1st Thursday of the Month, No January, February, or March meetings.
Teleconference Caregivers Support Group - hosted by Christine Salewsky, Ruth Lentner,
& Dave Stickles. The meetings are on the last Sunday of the month at 7:00 PM. It will
not replace any of the existing Support Groups. Call the office at 1-800-909-0073 if you
want to join and get the call in information.
FOR YOUR INFORMATION:
What you need to bring with you for your Social Security Disability Interview
An original or certified copy of your birth certificate
Proof of U.S. citizenship or legal residency if born in a different country
Original or certified copy of your discharge papers for all periods of active duty in
the military
W-2 form from last year
If you were self-employed, your federal tax return (IRS 1040, Schedules C & SE)
Workers compensation information, including date of injury, claim number and
payment amount
Social Security Numbers of your spouse and children
Name, address and phone number of a person who can get in touch with you if
necessary
Names, addresses and phone numbers of all doctors & other treating sources
Dates seen by each treating source
List of medications you are taking
Medical records in your possession
Kind of jobs and dates you worked in the 15 years before becoming disabled
Doctors or Neurologists HD diagnosis, the more thorough and better this is the
more likely the disability will go through the first time.

HDSA Michigan Chapter
1174 James Savage Road
Midland, MI 48640-5651
NON-PROFIT ORG.
U.S.POSTAGE
PAID
MIDLAND, MI
Permit # 335
*ADDRESS SERVICE REQUESTED *
CHAPTER HELPLINE:
(800) 909-0073
CHAPTER OFFICE:
(989) 832-4170
FAX: (989) 832-4171
WEB: www.hdsa.org Click on MI
Chapter or go directly to our
Chapter Web Site by going to:
www.hdsa.org/mi
C H A P T E R
P R EO SF I F I C E R S
D E N T :
PRESIDENT:
Dave Stickles
VICE PRESIDENT:
Open
SECRETARY:
Christine Salewsky
TREASURER:
Cheryl Heinzman
“BRIDGES OF HOPE”
Editing and Publishing Team:
Ruth Lentner
Dave Stickles
Printing and Mailing:
Mashue Printing,
Midland, MI
Article inserts & ideas may be sent to
dstick44@chartermi.net
Editing rights apply
This newsletter is an official
publication of the Michigan
Chapter of the Huntington’s
Disease Society of America,
1174 James Savage Road; Midland,
MI 48640-5651.
This newsletter attempts to
report all items of interest relating
to individuals with Huntington’s
Disease, their families,
health care professionals and
interested friends and supporters.
HDSA and the Michigan
Chapter do not provide medical
advice, nor do they promote,
endorse or recommend any
product, therapy or institution.
Please check all drug treatments,
therapies and products
with your physician. Statements
and opinions expressed in articles
are not necessarily those of
HDSA or the Michigan Chapter.