February 2013 - 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 2013 

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: Research 

Page 3: Enroll-HD Study 

Page 4: Spotlight on a 

Cure 

Page 5: Walk for HD 

Page 6: Hoops for HD 

Page 7: Enduro Race 

Fundraiser, Kathleen 

Samulski Advocacy, Chapter 

Board , Going Green. 

Page 8: Terleconference 

Support Group , Going 

Green 

Page 9: Wheelchair & 

Papergator 

Page 10: Caregivers Corner 

, Living Positively, 

Stem Cell Research Funding 

Page 11: Stem Cell Research 

Funding 

Page 12: In Loving Memory 

Page 13: Fundraising 

Page 14, 15: Support 

Group Meetings, SS 

Disability 

HDSA Michigan Chapter P.O. Box 21037, Lansing MI 48909. The Help line Number 

is 1-800-909-0073, the Chapter’s business number is 989-832-4170, and the 

fax number is 517-827-4950, E-Mail: hdsami@att.net, and the web site address 

is www.hdsa.org/mi Please note Mailing address and Fax Number are New. 

At the end of March we will be closing our physical office in Midland and we will be 

converting to home based offices. Our Bookkeeper and Office Manager will be Katie Sullivan 

in Lansing. She will also be responsible for sending out new family packets, other 

educational material, and thank you’s. We will have a storage facility in Midland to store 

donated equipment and other items we need to save. Our Helpline number and email address 

will remain the same. We will have a new mailing address and fax number. We will 

also be contracting with a new Family Services Coordinator/Social Worker in the next couple 

months as Danny Berry is no longer with us. 

On March 9th Krissi Putansu from the Royal Oak Support Group and friends will 

put on another wonderful Spotlight on a Cure Talent Show Fundraiser for HD that not only 

raises funds for HD but also proves to be many hours of excellent entertainment, and 

some delicious food sponsored by Lundbeck, Inc. There will be non stop fun throughout 

the entire evening. 

On May 18th there will be a Team Hope Walk in Grand Rapids, sponsored by the 

Michigan Chapter coordinated by Chelsea Boers, and a Hoop-a-thon put on by the Hathaway 

family and Friends in Grosse Point Park sponsored by the HDSA Great Lakes Region. 

The National HDSA Meeting will be held in Jacksonville, FL, June 21-23, 2013. 

Our New Chapter Social Worker and a board member will attended the meeting along with 

many others from the Michigan Chapter. See the National HDSA web site www.hdsa.org 

for further details . For families that have not attended before some scholarships are being 

provided by Lundbeck, Inc. to help new families attend. See the National HDSA web 

site www.hdsa.org for application. The sooner these are applied for the greater the 

chance of receiving one. A limited number of Scholarships may be available form the 

Michigan Chapter for prior attendees. 

On August 4-9 we will have our Circle of Friends Camp at Camp Fish Tales in Pinconning 

MI, Please call our chapter helpline 1-800-909-0073 or email hdsami@att.net 

for further details or to have an application mailed in early summer. The camp is intended 

for persons in the mid-stages of HD who are still ambulatory. 

The Michigan Chapter State conference is being planned and will be held in the 

Lansing area this year, in the October/November time frame. 

... Dave Stickles

“Bridges of Hope” HDSA Michigan Chapter -2- 

Prana Biotechnology publishes positive results for PBT2 in animal models of HD 

By: George Yohrling, PhD, Director of Scientific and Medical Affairs at HDSA 

Researchers from Prana Biotechnology and UCSF have recently published data on the small molecule, 

PBT2, in two different animal models of Huntington’s disease (Cherny et al). PBT2 is a novel compound 

that is known to cross the blood-brain barrier, appears safe to humans and has demonstrated neuroprotective 

effects in various brain disease models. The purported mechanism of action of PBT2 is to act as a 

chaperone of metals such as iron and zinc. Both iron and zinc are thought to play an important role in 

the aggregation of proteins, such as huntingtin. PBT2 is thought to sequester these metals away from 

the mutant huntingtin protein and prevent the formation of toxic, oligomeric (multi-subunit) forms of huntingtin. 

In the newly published paper, Cherny et al tested PBT2 in both a worm and mouse model of HD. While 

PBT2 delayed the paralysis commonly observed in the HD worm, it is interesting to note that PBT2 had no 

apparent effect on the aggregation of the short polyglutamine-containing protein that is expressed in their 

worm. This suggests that the worm model used here is not ideal for understanding the impact PBT2 has 

on the different forms of huntingtin. 

More striking results were seen when the researchers administered PBT2 to a commonly used mouse 

model of HD (R6/2 mouse). The R6/2 mice express just a short fragment (3%) of the total human huntingtin 

protein. When dosed beginning at just three weeks of age, PBT2 had a significant impact on motor 

behavior, body weight, brain weight and survival of the HD mouse. They reported that HD mice treated 

with PBT2 lived 26% longer than the same HD mice treated with a vehicle control. 

While these results are certainly encouraging they are not entirely unexpected. Previous work from 

Nguyen et al in 2005 showed that clioquinol, a compound very similar to PBT2 in terms of chemical structure 

and mechanism of action, improved survival in the R6/2 mouse by 20% and had a significant effect 

on huntingtin aggregation. 

Based on these results, as well as previous data suggesting PBT2 may positively impact cognition 

(thinking) in Alzheimer’s disease, Prana set out to discover if PBT2 will have similar effects in HD patients. 

PBT2 is currently being tested in a Phase II clinical study called Reach2HD for patients with early to midstage 

HD in Australia and the United States. The Reach2HD trial is now fully recruited. The HD research 

community will be anxiously awaiting the results from this pivotal study. 

References: 

Nguyen T, Hamby A, Massa SM. Clioquinol down-regulates mutant huntingtin expression in vitro and mitigates 

pathology in a Huntington's disease mouse model. Proc Natl Acad Sci U S A. 2005 Aug 16; 102 

(33):11840-5. 

Cherny RA, Ayton S, Finkelstein DI, Bush AI, McColl G, Massa SM. PBT2 reduces toxicity in a C. elegans 

model of polyQ aggregation and extends lifespan, reduces striatal atrophy and improves motors performance 

in the R6/2 mouse model of Huntington’s disease. J Huntington’s Disease 2012, 211-219.


Enroll-HD Study 

Data and biologic samples are being prospectively collected at research centers worldwide from individuals 

affected by HD and those who are part of an HD family. The study goals are: 

1. To improve the understanding of the dynamic phenotypic spectrum and the disease mechanisms of HD 

by: 

· collecting natural history data covering the cognitive, behavioral and motor domains permitting 

estimates of rates of progression in HD and allowing insights into the neurobiology of HD, 

· collecting data and biologic samples to identify genetic and environmental factors influencing and/ 

or modifying the HD phenotype and disease progression, and 

· promoting interrogatory studies that may provide clues to the pathogenesis of HD. 

2. To promote development of evidence-based guidelines to inform clinical decision making and improve 

health outcomes for the participant/family unit by: 

· assisting in the identification of beneficial interventions (clinical, pharmaco-therapeutic, nonpharmacologic), 

· facilitating the dissemination and implementation of currently proposed best clinical practices, 

· providing a platform for conducting outcome research, and 

· promoting exploratory data analysis projects that may identify processes to further improve health 

care of affected individuals and their families 

3. To provide a platform to support the design and conduct of clinical trials by: 

· providing a resource to identify, develop and qualify novel assessment tools, clinical endpoints and 

biomarkers, 

· collecting longitudinal data to inform disease modeling studies, 

· facilitating the identification of potential trial participants, and 

· informing the selection of potential trial participants using data to estimate and quantify slopes/ 

rates of disease progression (providing “run-in” data). 

The design of Enroll-HD puts no limit on the number of participants recruited or a timeframe in which the 

study will be completed. 

Dr. John Kamholz 

Professor of Neurology and Molecular Medicine and Genetics 

Wayne State University School of Medicine 

Editors note: Wayne State University School of Medicine is investigation the necessary steps to become 

one of the study sites, but at this time is not part of the study group. We will update you with any 

updates either on the chapter web site or in the next newsletter.


SPOTLIGHT ON A CURE 

A Talent Showcase to benefit 

Huntington's Disease 

Saturday March 9 

7:00pm 

Lafayette Grande --- 1 Lafayette, Pontiac 

Tickets are $20 in advance or $25 at the door. Tables of 8 may be purchased for $130. Credit cards 

accepted at the door. Please make checks payable to “HDSA-Michigan Chapter”. To purchase tickets 

in advance, visit 

https://www.hdsa.org/events/11732/register.html 

Tickets include: Appetizers, an evening of quality entertainment & surprises provided by our Talent 

Showcase performers and our House Band. 

Cash bar available. 

For questions or to register for auditions to perform in the Talent Showcase please contact Krissi at 

(586) 822-1730 or email krissilynn18@hotmail.com or Amber at (586) 530-6762. Auditions will be 

held on march 3rd at 1:00 pm. For more information on Huntington’s Disease, please visit HDSA.org


Join us on Saturday, May 18, 2013 for the 

2nd Annual Grand Rapids Team Hope Walk for Huntington's Disease! 

Registration begins at 10:30 am / Walk begins at 11:30 am 

At the Johnson Park Enclosed Shelter (new location) 

2600 Wison Ave, Walker, MI 49534 

Adults: $15 Kids 13 & under: FREE 

Registration includes participation in the walk, a team hope t-shirt*, lunch by Pizza Hut/Wings St, awesome 

raffle and auction prizes, and fun with family and friends! We encourage everyone to round up their 

friends, co-workers, and neighbors and create teams! 

Help for Today 

The first $13,000 raised benefits the HDSA Michigan Chapter's fight to improve the lives of individuals 

and families affected by HD! 

Hope for Tomorrow 

Additional funds raised will be designated to research to find a cure for HD! 

To make an online Donation: 

www.firstgiving.com/hdsa-mi/grteamhopewalk 

Or 

Make checks payable to 

HDSA Michigan Chapter, Attn: GR Team Hope 

P.O. Box 21037, Lansing, MI 48909 

For more information please contact: 

Chelsea Boers, cboers91@yahoo.com, 269-370-3997 

*T-shirts are included in the registration until May 1, 2013,. A limited selection of t-shirts 

will be available for $5.00 at the walk


What? 2nd Annual Hoops for Huntington's is Saturday, May 18th, 2013 

When? Saturday May 18th, 2013, 11:00 AM—4:00 PM 

Where? Windmill Pointe Park Gym, 14900 Windmill Point Drive, Grosse Point Park MI 

48230 

The 2013 Hoops for HD is designed to raise money, increase awareness to fight this devastating 

disease., or fund HD Research. Proceeds support HDSA's fight to improve the lives 

of people affected by HD and their families. This Hoop-a-thon is sponsored by the HDSA 

Great Lakes Region. 

For more information, or to volunteer please contact Bridget at: (313) 580-9253 

bridgetmhathaway@gmail.com 

To Donate Online : http://www.firstgiving.com/hdsa-greatlakes/hoops-for-huntington 

The Hathaway 

Family


Enduro Race for a Cure at the Kalamazoo Speedway With Fireworks !! 

Sunday May 26., 2013 6:00 PM on the Party Deck 

for more Information , Tickets, or to Volunteer Contact: 

Sara Boers , sara.boers@att.net , 269-381-7725 

They are looking for Silent Auction Items, and Sponsors, please contact Sara. 

________________________________________________________________________________________ 

Kathleen Samulski will be in Washington DC on April 3 & 4, 2013 with HDSA to participate 

in the HDSA National Symposium and the 2 nd Annual Advocacy Day on the Hill. This invitation 

is a huge honor for Kathleen and we are grateful to have her representing Michigan 

and all individuals and families struggling with HD!! Thank you Kathleen!!! 

Kathleen is also participating in a Workplace Accommodations Team for HD. 

The Current Michigan Chapter board of directors consist of Dave Stickles—President, Krissi 

Putansu—Vice President, Chelsea Boers—Secretary, Alisha Johnson, Ruth Lentner, Kathleen 

Samulski, Dr. John Kamholz, Kelly Kennelly, Peggy Reddaway, Charlene Soleau, and Kathy 

Koziol. We have many new board members and appreciate their dedication to our HD families 

along with current board members. Thank you all for your contributions to the Michigan 

Chapter and it’s fight to find cure or effective treatment for HD, and improve the lives of 

those struggling with HD. 

________________________________________________________________________________________ 

________________________________________________________________________________________ 

We’re Going Green !! 

To help cut the cost and become more environmentally friendly we are updating our mailing 

database! Please fill out the reverse side of this sheet and return to our office to help us in 

our efforts. If you do not have internet access and want to continue receiving a paper copy 

we will keep you on the hard copy mailing list. Thank You!! 

We are also Moving our office: 

HDSA Michigan Chapter, P.O. Box 21037, Lansing MI 48909 

Office Phone 989-832-4170, Helpline : 1-800-909-0073 

Email: hdsami@att.net Web Site: www.hdsa.org/mi


Teleconference Caregivers Support Group 

A Teleconference Caregivers Support Group will start again in July and is being hosted by 

Dave Stickles/Ruth Lentner. The meetings are on the last Sunday of the month at 8:00 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 

8:00 PM. Again it will not replace any of the existing Support Groups. 

Please contact the Chapter Office on the 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. Contact Dave at 1-800-909-0073 for further information. 

________________________________________________________________________________________ 

Please join me in congratulating Danny Berry and his wife Darcy on the arrival of 

their twin daughters Harper and Olivia on January 29, 2013. 

________________________________________________________________________________________ 

We’re Going Green !! 

Please send HDSA Michigan Chapter 

Publication and information to my: 

[ ] Email Address 

Name: _______________________________________ 

Email:________________________________________ 

HDSA Michigan Chapter 

[ ] Current Address P.O. Box 21037 

Name: _______________________________________ Lansing , MI 48909 

Address:______________________________________ 

_____________________________________________ 

_____________________________________________ 

[ ] Remove my information from the mailing List


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. 

We also have a number of other items in the office, a couple Broda Chairs, a Gerry Chair, several wheel 

chairs, some walkers, canes, Depends, and protective absorbent bedding pads. If you feel you can use 

any of these items please call the office and we will make arrangements to get them to you. 

_______________________________________________________________________________________ 

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


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 

________________________________________________________________________________________ 

HD Living Positive Group Invites Participants to Join! 

Individuals who test positive through Pre-Symptomatic Testing Programs for Huntington Disease and 

those living-at-risk often feel isolation and uncertainty about their future. Traditional HD Support 

Groups often are inadequate to address the immediate needs of these individuals who are coping 

with the challenge of deciding about whether to be tested or how to live in relationships at work and 

in their personal lives after testing positive. These individuals often are not showing any clinical 

symptoms. In 2011 an HD Living Positive Group was started in Grand Rapids Michigan to meet this 

need for those who test positive and/or are living-at-risk. The HDSA Michigan Chapter provides financial 

support for a monthly group that meets at a private psychotherapy practice location. A brochure 

was developed to include the topics for discussion. The facilitator is a clinical social worker 

and a certified genetic counselor. A total of 18 individuals have attended one or more groups. Structure 

for the meetings includes a talking stick for introductions and for closing. Confidentiality is discussed 

to provide a trusting environment for everyone to share their personal concerns. Current newsletters and other educational 

materials are provided. Some of the topics discussed include how to "live positive" following test results, how to prolong 

the onset of symptoms, the benefits of meditation and exercise, the use of alternative therapies, the challenge of losing the 

independence of driving, who to tell and how to tell of test results, how to prepare young children and adolescents for HD in 

their lives, the difference between unawareness and denial, how to navigate the dual roles of being gene positive and a caregiver, 

how to support one another, and how to deal with the secrecy and stigma of HD. For more Information go to this website 

and click on Brochure: www.kathleendelp.com or call Kathleen at 616-581-3085 

________________________________________________________________________________________ 

Huntington's Disease Advocates Celebrate Stem Cell Research Funding: 

A Step Closer to Clinical Trials 

The California Institute for Regenerative Medicine on July 26, 2012 Awards $18.9 Million for 

Huntington’s Disease Research to UC Davis 

In what scientists and patients advocates say is an exciting development in the area of Huntington's disease (HD) 

research, California's stem cell agency today approved a grant proposal worth nearly $20 million that is designed 

to propel researchers at UC Davis Health System toward preparing for the first FDA-approved cellular therapy for 

HD patients. The researchers plan to use a novel therapy that could restore the health of brain cells damaged by 

a hallmark of the devastating neurodegenerative disease, the mutant huntingtin (htt) protein. 

With a green light from the governing board of the California Institute for Regenerative Medicine (CIRM), Vicki 

Wheelock, clinical professor of neurology and director of the HDSA Center of Excellence at UC Davis, and Jan 

Nolta, professor of internal medicine and director of the UC Davis Institute for Regenerative Cures, are leading a 

research project that plans to infuse specially engineered mesenchymal stem cells into the brains of Huntington's 

disease patients. The stem cells, which will be customized to secrete brain-derived neurotrophic factor (BDNF),


are expected to restore the health of brain cells damaged by the mutant htt protein. This therapy has been shown to be 

effective in animal models of HD. 

The planned UC Davis trial for treating HD will target earlier phases of the disease, when patients are younger and before 

the illness's full impact takes its toll. Vicki Wheelock said that mesenchymal stem cells represent remarkably effective 

delivery vehicles because they move well through tissue and can produce high levels of growth factor for uptake by the 

damaged neurons. In preparation for its phase I clinical trial with HD patients, the Huntington's disease team is carefully 

testing its proposed cellular infusion therapy for safety and effectiveness. 

"The delivery of brain-derived neurotrophic factors via mesenchymal stem cells significantly reduces behavioral deficits 

in HD mice back to nearly normal levels," said Nolta, who has been working with Wheelock for the past several years in 

conducting the research for their successful grant proposal to CIRM. "We are doing further work to ensure that the proposed 

therapy will be safe and effective as we prepare for a clinical trial." 

For patients and their families, who have been tireless advocates for stem cell research, a multimillion dollar grant and 

the promise of a phase I clinical trial are breakthrough accomplishments in the fight to overcome Huntington's disease. 

"It's hard to put into words what this stem cell funding truly means for families like mine," said Judy Roberson, who lost 

both her 51-year-old husband and brother-in-law to the disease, and then went on to provide the impetus for establishing 

a multidisciplinary HD clinic at UC Davis. "The determination and dedication of Dr. Wheelock and Dr. Nolta, combined 

with CIRM's support, gives us the edge we need to overcome this terrible disease." 

Roberson and other patient advocates helped provide funding support to UC Davis at a crucial point in the university's 

stem cell research for HD. Also, a pilot grant from the university's Clinical and Translational Science Center, along with 

donations from two non-profit organizations - Team KJ and the Deshalamar Foundation - enabled Wheelock and Nolta to 

conduct the preliminary biosafety studies that were needed before the state stem cell agency would consider their Disease 

Team grant proposal. Generous private philanthropy from the Roberson and Charles Pue families provided early 

support to the HD clinic at UC Davis, which is now a hub for clinical care and research trials and has followed over 300 

patients with the disease. 

To develop the proposed therapy to be used in the clinical trial, basic scientists and clinicians who comprise the Huntington's 

disease team have met weekly for the past several years. Nolta noted that the team taps into expertise from 

throughout UC Davis, including the university's health system leadership, led by Claire Pomeroy, vice chancellor for Human 

Health Sciences and dean of the School of Medicine, and Fred Meyers, the school's executive associate dean. 

Wheelock credited her team's membership in the Huntington Study Group for developing expertise in conducting human 

HD research studies. 

"We are also consulting with national and international Huntington's disease experts," said Nolta. "But most importantly, 

the Huntington's disease community and patient advocates, who already have helped us make great strides through 

their philanthropy and participation in observational clinical trials, will continue to provide incredible inspiration for all of 

us who are working to treat this heartbreaking disease." 

UC Davis is playing a leading role in regenerative medicine, with nearly 150 scientists working on a variety of stem cellrelated 

research projects at campus locations in both Davis and Sacramento. The UC Davis Institute for Regenerative 

Cures, a facility supported by the California Institute for Regenerative Medicine (CIRM), opened in 2010 on the Sacramento 

campus. This $62 million facility is the university's hub for stem cell science. It includes Northern California's largest 

academic Good Manufacturing Practice laboratory, with state-of-the-art equipment and manufacturing rooms for cellular 

and gene therapies. UC Davis also has a Translational Human Embryonic Stem Cell Shared Research Facility in 

Davis and a collaborative partnership with the Institute for Pediatric Regenerative Medicine at Shriners Hospital for Children 

Northern California. All of the programs and facilities complement the university's Clinical and Translational Science 

Center, and focus on turning stem cells into cures. 

Dr. Gary Dunbar’s Lab at Central Michigan University conducted earlier Stem Cell research as a basis for this grant.


In Loving Memory 

Frank E. Baiardi 

Judith Vasil Begeman 

Raymond Berkobien 

Thomas “Tom” Bohnett 

Inez S. Bonadio 

Cal Burton 

Philip F. Cameron 

Hilda Casori 

Neta K. Diebler 

Jennifer Domagalski 

Michael H. Greyerbiehl 

Christina Jenkinson 

Eugene “Gene” Lahusky 

Mark Lipstraw 

Vera McClanskan 

Nancy Mealbach 

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" 

Floris Miller 

Mary E. Ortowski 

Hal Peine 

Dayle Roberge 

Williard Scott 

Karen Stock 

Ron Sullivan 

Bruce Walker 

Kim M. (Wieske) Wolf


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 

P.O. Box 21037 

Lansing, MI 48909 

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

Adrian 


HDSA MICHIGAN SUPPORT GROUP MEETINGS 

AREA WHEN WHERE CONTACT 

1st Sunday monthly after that, 

check our web site or coordinator 

Lynwood Manor, 

730 Kimole Lane, 

Adrian MI 49221 

Myndi Milliken 

517-263-6771 ext. 436 

Grand Rapids & Western 

MI 

Fourth Wednesday Quarterly 

6:30-8:00 PM 

January, April, July, October 

St. Mary's Neuroscience Ctr 

Hauenstein 1 Community 

Education Conference Room 

220 Cherry Street SE 

Grand Rapids MI 49503 

Dave 

800-909-0073 

Greater Genesee 

County Area 

Kalamazoo 

Lansing (New) 

Living Positive 

Support Group 

Grand Rapids -Ada 

Macomb County 

Caregivers Group 

1st Monday 

7:00 pm 

(2nd Monday in September 

due to Labor Day) 

Monthly Meetings Through 

May, Nights Varies, 6:00 pm 

(Check with Coordinator for 

Days) 

3rd Thursday of the Month 

Quarterly 

6:00—7:30 PM 

Jan, April, July, October 

2nd Thursday 6:30-8:30 PM 

(For Gene Positive and at Risk 

Individuals) 

2nd Tuesday 

7:30 pm 

Woodhaven Senior Community 

G-5201 Woodhaven Ct 

Flint MI 48532 

First Congregational 

Church 

129 S. Park Street 

Kalamazoo MI 49007 

Community Mental Health 

Building Atrium 

812 Jolly Rd. 

Lansing MI 48910 

Psychotherapy and 

Consultation Offices 

967 Spaulding SE, Suite E 

Ada MI 49301 

4571 Reflections Drive 

Sterling Heights 

Jean or Barb 

810-659-4548 

Sara 

269-381-7725 

800-909-0073 

Facilitated by 

Janet Howes 

Kathy Delp at 

616-581-3085 

Kath6613@aol.com 

Deanna (Dee) 

586-997-3089 

Menominee Currently Inactive For Local Information Call 

Chris 715-938-5902 

Mt. Pleasant 

Royal Oak 

Taylor & Downriver 

Tri-Cities Area 

2nd Tuesday 7:00 pm 

No Meetings July, August 

3rd Saturday 1-3PM 

April 20, 2013 

July 20, 2013 

November 16, 2013 

Currently Inactive - if you 

are interested in attending 

please contact Dennis so 

we can determine interest 

1st Thursday 

7:00 pm 

No July or August Meetings 

Coldwell Bankers, 

304 East Broadway, 

Mt. Pleasant MI 48858 

Wm. Beaumont Hospital 

Administration Building 

Conference Room A/B/C 

3601 West 13 Mile Rd. 

TBD 

Taylor MI 

Saginaw Township Fire 

Dept. Station No. 3 

153 N. Center Rd 

Saginaw MI 

Ann 989-561-5023 

Dave 989-496-3273 

Karen 586-792-6579 

Krissi 586-822-1730 

Dennis 313-292-4717 

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


HDSA MICHIGAN SUPPORT GROUP MEETINGS 

Grand Rapids & Western Michigan—Fourth Wednesday Quarterly, April, July, October 

Greater Genesee County—1st Monday of the month, except 2nd Monday in September 

due to Labor Day 

Kalamazoo– Monthly Meetings through May, nights varies each month, check with Sara. 

Lansing—Third Thursday of the Month Quarterly, April, July and October. 

Living Positive Support Group, Grand Rapids/Ada— 2nd Thursday from 6:30 –8:30 

Mt. Pleasant - 2nd Tuesday of the Month, No July or August, 

Royal Oak— 3rd Saturday, April, July and November. 

Tri-City - 1st Thursday of the Month, No July or August meetings. 

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.

NON-PROFIT ORG. 

U.S.POSTAGE 

PAID 

MIDLAND, MI 

Permit # 335 

HDSA Michigan Chapter 

P.O. Box 21037 

Lansing, MI 48909 

*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: 

Krissi Putansu 

SECRETARY: 

Chelsea Boers 

TREASURER: 

Open 

“BRIDGES OF HOPE” 

Editing and Publishing Team: 

Ruth Lentner 

Dave Stickles 

Printing and Mailing: 

Tigner Printing, 

Coleman, 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, PO Box 21037 Lansing, 

MI 48909. 

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.

February 2013 - Huntington's Disease Society of America

You also want an ePaper? Increase the reach of your titles

Delete template?

Save as template?