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FALL/WINTER– <strong>2012</strong><br />

PRESIDENT’S MESSAGE<br />

To those of us active in the governance of the Chapter, <strong>our</strong><br />

proceedings are taken for granted. Often, however, I get<br />

questions about the organizational structure. I’ll try in this<br />

column to provide at least some of this information.<br />

First of all, the Chapter is the local representative of HDSA.<br />

There are 48 chapters and affiliates across the country. We<br />

are responsible to the Great Lakes Region and its Regional<br />

Development Director, Deb Boyd. The Great Lakes Region<br />

includes chapters in Ohio, Indiana, Michigan, Wisconsin,<br />

Illinois, Kentucky, and Miss<strong>our</strong>i.<br />

The National Office oversees the region and the chapters.<br />

HDSA headquarters are in New York City and Donald Barr,<br />

a member of <strong>our</strong> Board and former president, is Chairman<br />

of the National Board. As with any such organization, there<br />

are various department heads, each in charge of a particular<br />

function of HDSA.<br />

Locally, we also have officers and a Board, whose names<br />

and positions are printed on the back of this newsletter.<br />

HDSA’s mission statement includes “To improve the lives of<br />

people with Huntington’s disease and their families.” The<br />

Chapter works to provide programs and services to the HD<br />

community facilitated by <strong>our</strong> Social Worker, Tiffany Cousino,<br />

and the Community Services Committee. Support groups<br />

are held monthly in Akron and Cleveland. Sub-committees<br />

organize the Annual Education Forum in May and other<br />

special educational events and service projects to raise<br />

awareness of HD.<br />

There are other committees charged with fund raising by<br />

hosting special events such as the Dancing Like the Stars<br />

gala, the Amaryllis Campaign, the Golf Outing and the Team<br />

Hope Walks, etc. All committees as well as the Board are<br />

composed of volunteers. Our board members also reach out<br />

into the research community. For example, Dr. Alan Tartakoff<br />

of Case Western Reserve University, <strong>our</strong> professional<br />

education chairman, recently co-chaired “24 H<strong>our</strong>s for<br />

Huntington’s <strong>Disease</strong>” which brought together in Cleveland<br />

some of the brightest minds engaged in HD research from<br />

all over the country and even from overseas! We are also<br />

working with a project to coordinate medical services for HD<br />

patients among University<br />

Hospitals, MetroHealth and<br />

Cleveland Clinic. The Board<br />

meets formally in six bimonthly<br />

meetings and<br />

the Chapter conducts an<br />

annual meeting in May.<br />

Visitors are always welcome<br />

at these meetings. There<br />

are also special meetings<br />

of the Board on occasion<br />

as well as meetings of the<br />

Executive Committee.<br />

We are experiencing exciting times. At the national level, a<br />

strategic plan has been developed and released earlier this<br />

year. In this regard, I would like to shine the spotlight on <strong>our</strong><br />

Vice President, Mackenzie Platten, who has created a parallel<br />

strategic plan at the local level. This involves reformulation<br />

of the committee structure and revitalization of <strong>our</strong> service<br />

plan. Mackenzie is one of the most energetic persons with<br />

whom I have come in contact in the HD world. You may<br />

have heard her speak on any number of occasions and may<br />

very well see a lot more of her abilities in the future as she<br />

takes on additional leadership functions. She has provided<br />

networking through all three organizational levels and is<br />

never without exciting new projects! Part of the new plan<br />

ambitiously lays out new areas of emphasis, most of which<br />

require the involvement of volunteers.<br />

Lastly, there are so many ways that you can make a difference<br />

in <strong>our</strong> Chapter and help us bring Help for Today. Hope for<br />

Tomorrow. Please consider making a contribution today.<br />

Y<strong>our</strong> donation to HDSA can be made using the enclosed<br />

envelope or online at www.hdsa.org/neohdon. Every dollar<br />

counts!<br />

As you will see, HDSA is active at all levels and in many<br />

different ways. We are always happy to entertain<br />

suggestions for improvement and welcome volunteers for<br />

<strong>our</strong> various activities. More information about HDSA can be<br />

found on the website at www.hdsa.org.<br />

Daniel J. Hostetler, President<br />

Happy Holidays!


NATIONAL HDSA NEWS<br />

Chief Scientific Officer Hired to Guide Research Initiative<br />

This past September, HDSA hired a Director of Medical & Scientific<br />

Affairs, George Yohrling, Ph.D., to take on the task of guiding the new<br />

HDSA Research Initiative.<br />

Dr. Yohrling has been an active member of the Huntington’s research<br />

community for many years and is uniquely qualified for this new<br />

role. After receiving his Ph.D. in Pharmacology from Wake Forest<br />

University, Dr. Yohrling became a research fellow at Harvard University/<br />

Massachusetts General Hospital in the laboratory of the<br />

HDSA Coalition for the Cure Member and National Trustee, Dr. Jang-Ho<br />

Cha. Most recently, Dr. Yohrling served as Director of Systems Biology-<br />

Pathway Assessment at CHDI.<br />

The new HDSA Research Initiative aims to create a pipeline of new HD<br />

researchers, strengthen HDSA’s current partnerships with academic,<br />

commercial and government research organizations, and fuel research<br />

with a clinical component through the HDSA Centers of Excellence.<br />

Amaryllis Kits Make Great Gifts!<br />

Are you struggling with what to give a friend or co-worker for their birthday or as a<br />

housewarming gift? Do you need creative ideas for teachers or relatives for holidays?<br />

Consider purchasing Amaryllis kits and support HDSA!<br />

The Amaryllis Campaign is in full swing. Eva Weissman is returning as Chair and will be<br />

assisted by Anita Davis for order placement. One case contains 16 individual kits, with<br />

each kit including an amaryllis bulb, decorative pot, professional growing mix, planting<br />

care and instructions. Case orders will be shipped directly to y<strong>our</strong> home or office for<br />

$160 (includes free shipping).<br />

Not sure you can use a whole case with 16 kits? Many of <strong>our</strong> members share case orders<br />

with a neighbor or friend. At just $10 each, these beautiful kits are a great value!<br />

SOCIAL WORKER<br />

COLUMN<br />

Northeast Ohio Chapter’s Social Worker,<br />

Tiffany Cousino, LISW, is available for<br />

supportive counseling, education,<br />

community res<strong>our</strong>ces connections and long<br />

term care planning. She can be reached at<br />

the new Chapter Helpline Number<br />

(440) 742-1284 or via e-mail at<br />

tcousino@hdsa.org.<br />

Quantity<br />

Variety<br />

Cost<br />

Per Case<br />

Red Lion $160.00<br />

Apple Blossom (Pink & White) $160.00<br />

Athene (White) $160.00<br />

Minerva (Orange & White) $160.00<br />

Assorted – 6 Red Lion, 4 Minerva,<br />

3 Apple Blossom, 3 Athene<br />

$160.00<br />

Additional Donation<br />

TOTAL<br />

Extension<br />

Make checks payable to:<br />

HDSA<br />

Case orders can be placed via<br />

email to anitadavis362@ymail.<br />

com or mail to:<br />

Anita Davis<br />

4566 Hunting Valley Lane<br />

Brecksville OH 44141<br />

Individual kits can be ordered<br />

(shipping charges will apply)<br />

online at:<br />

www.hdsa.org/amaryllis<br />

Check enclosed in the amount of $_________ Please charge $_________ to my<br />

Credit Card: o Master Card o Visa o American Express o Discover<br />

Credit Card #: ___________________________________ CVV#: ______ Expiration Date: ___/_____<br />

Signature: ______________________________________<br />

Name: _________________________________________ Address: _________________________________________<br />

_________________________________________________________________________________________________<br />

Phone__________________________________________ E-Mail Address ____________________________________<br />

Mail to: HDSA c/o Anita Davis 4566 Hunting Valley Lane, Brecksville, OH 44141


COMMUNITY SERVICES<br />

The principal means in which the HDSA communicates and assists affected<br />

families in <strong>our</strong> area is through two Support Groups which meet monthly in<br />

Akron and Independence. These meetings are administered through Tiffany<br />

Cousino, LISW, Northeast Ohio Chapter’s Social Worker. Permit me to offer at<br />

this juncture that <strong>our</strong> Chapter is very fortunate to have her on <strong>our</strong> staff.<br />

My wife Millicent died on March16, 2011 from complications of Huntington’s<br />

disease. The Support Group format worked for me as I made personal friends<br />

with husbands in my same situation, who were Caregivers for their spouse.<br />

We recognize that this meeting format does not work for everyone. Isolation<br />

and lack of social interaction is not unusual for HD patients and their<br />

caregivers. Sometimes, caregivers cannot leave their home easily, but it is<br />

important for them to communicate with others at these Support Group<br />

Meetings who may be in a similar crossfire with HD and can offer insight.<br />

Tiffany meets each month with HD families at their homes and is able to bring<br />

other participants, like me, who have personal experience with HD to offer<br />

assistance. She is under contract with <strong>our</strong> Chapter so there is no cost to the<br />

family.<br />

Our local area Support Groups provide outreach programs including the<br />

giving of “gift baskets” to HD patients at a number of nursing homes. Our hope<br />

is to continue this effort as well as offer other outreach options to HD families<br />

in 2013.<br />

We also enc<strong>our</strong>age HD family participation in any drug trial for which the<br />

HD individual can qualify. One HD individual in the Independence Support<br />

Group is participating in a Selisistat drug trial at Wake Forest University,<br />

Winston-Salem, N.C. Trials such as this one are critical to finding an effective<br />

treatment for HD positive individuals.<br />

AREA SUPPORT<br />

GROUP MEETINGS<br />

Cleveland Area:<br />

Monday - Jan 14<br />

Monday - Feb 11<br />

Monday - Mar 11<br />

Monday - April 8<br />

Thursday - May 16<br />

Monday - June 10<br />

6:30 p.m. – 8:30 p.m.<br />

Independence Civic Center (Craft Room)<br />

6363 Selig Blvd.<br />

Independence, OH 44131<br />

Akron Area:<br />

First Tuesday of the Month<br />

6:30 p.m. – 7:45 p.m.<br />

Ellet Community Center<br />

2449 Wedgewood Drive<br />

Akron, OH 44319<br />

Our Support Groups are sensitive to everyone’s feelings and protects<br />

each family’s privacy. We want to help and we will. For more information,<br />

please contact Wesley G. Johnston, Jr. at (330) 922-3443 or via e-mail at<br />

Wes.Johnston1567@gmail.com.<br />

WELCOME<br />

NEW BOARD<br />

MEMBERS<br />

The Northeast Ohio Chapter board<br />

recently elected two new board<br />

members. Cory A. Baughman, CPA,<br />

with Barnes Wendling CPAs, was<br />

elected Chapter Treasurer at the<br />

Annual Meeting held on May 8. A<br />

Cleveland resident, he is a graduate<br />

of Cleveland State University. Shelly<br />

Hameed of Grafton was also elected<br />

as a Board Member. She is a graduate<br />

of The Ohio State University and<br />

employed as an account manager<br />

with Lundbeck Inc.<br />

DOUBLE YOUR DONATION<br />

THROUGH THE MATCHING GIFTS<br />

PROGRAM<br />

Stretch y<strong>our</strong> donation when y<strong>our</strong> company doubles y<strong>our</strong> contribution!<br />

Support HDSA when you and y<strong>our</strong> company participate in the HDSA Matching<br />

Gifts Program. Many employers have these programs in which the company<br />

matches the tax-deductible contribution you make to HDSA. Y<strong>our</strong> gift doubles<br />

(or more) when y<strong>our</strong> company belongs to HDSA’s Matching Gift Program.<br />

To make y<strong>our</strong> gift to HDSA grow, simply obtain a matching gift form from y<strong>our</strong><br />

Human Res<strong>our</strong>ces Department, enclose it with y<strong>our</strong> gift and mail to the Chapter<br />

Office. Anyone can make an online donation at www.hdsa.org/neohdon<br />

DONATIONS TO HDSA NOW MADE EASIER THROUGH PAYROLL DEDUCTIONS<br />

such as contributions through Community Health Charities. Contact Mike<br />

Ryan at mryan@healthcharities.org or at (614) 891-2566 for more information.


HDSA HOSTS 2nd<br />

DANCING LIKE THE STARS<br />

The HDSA Northeast Ohio Chapter hosted its second “Dancing Like the Stars” event at Executive<br />

Caterers at Landerhaven. Once again, co-chairs Nicole Visconsi Mawby and Karen Rechenbach, along<br />

with the committee provided an evening filled with dance competition hosted by American Dance<br />

Exchange and featuring The Art Company Orchestra presented by Special Productions.<br />

Guests were entertained by a beautiful dance performance by Nicole and her partner PJ Navarro of<br />

American Dance Exchange. Everyone then had an opportunity to bid for a spot as a contestant in <strong>our</strong><br />

dance competition. Paired with dance instructors, contestants danced for a panel of judges for their<br />

chance to walk away with the coveted Mirror Ball trophy. The winning couple of Patty Putzbach and<br />

Adam Maynard were presented with the Mirror Ball trophy.<br />

ABC’s Dancing with the Stars performer, Jonathan Roberts along with dance professionals Sergei<br />

Shapoval and Anna Tarnowska entertained guests with their lighter than air moves on the dance floor.<br />

Many of <strong>our</strong> guests had the opportunity to take a spin around the dance floor in the very capable<br />

arms of Jonathan and Sergei.<br />

Nicole Visconsi Mawby<br />

During the evening, guests enjoyed delicious food by Executive Caterers and<br />

had an opportunity to win a Tower of Wine or a Shop Til’ You Drop selection of<br />

gift cards. The rest of the evening could be spent dancing the night away to<br />

the entertaining melodies. The event raised more than $100,000 for HDSA.<br />

Thanks to everyone for their attendance and generosity!<br />

Photos from this event can be viewed online at www.hdsa.org/neoh.<br />

For more information about next year’s event, please contact Karen<br />

Rechenbach via e-mail at kkrech@att.net.<br />

Having a wonderful evening at the <strong>2012</strong><br />

Dancing Like the Stars!<br />

Thank you to <strong>our</strong><br />

<strong>2012</strong> Dancing Like the Stars<br />

Sponsors<br />

Mirror Ball Sponsors<br />

Nicole Visconsi Mawby<br />

Dominic A. Visconsi, Sr.<br />

Anthoni & Susan Visconsi<br />

The Case Western Reserve<br />

University School of Medicine<br />

Star Power Sponsors<br />

Julie & Dominic A. Visconsi, Jr.<br />

Lundbeck, Inc.<br />

AMG Marketing Res<strong>our</strong>ces, Inc.<br />

Umberto Fedeli – The Fedeli Group<br />

Third Federal Foundation<br />

Steven A. Samuels<br />

O’Brien Construction, Inc.<br />

Quickstep Sponsors<br />

Serpentini Chevrolet<br />

Huntington National Bank<br />

Family Sponsors<br />

Scott Wolstein<br />

Wolf Real Estate Management, LLC<br />

Anonymous<br />

Friends of HDSA<br />

Kelly & Visconsi Associates, LLC<br />

Moen, Inc.<br />

Robert & Noelle Fazio<br />

William Sopko & Sons Co., Inc.<br />

PJ Navarro, Nicole Visconsi, Mackenzie Platten,<br />

and Jonathan Roberts<br />

Nicole awards the Mirror Ball<br />

to Patty Putzbach and Adam Maynard


Huntington’s <strong>Disease</strong><br />

Society of America<br />

4TH ANNUAL<br />

TEAM HOPE WALK<br />

The Northeast Ohio Chapter’s “4th Annual Team Hope<br />

Walk” took place on July 21 at Dodge Intermediate School<br />

in Twinsburg. More than 200 walkers joined together to<br />

help raise over $20,000 in of support Huntington’s disease.<br />

Honorary walk leaders<br />

included Mickey and Lauren<br />

LaRosa along with more than<br />

40 friends and family members who were a part of Team Jean Year 3. Team Jean<br />

walked in memory of Jean LaRosa (Mickey’s wife and Lauren’s mother) who succumbed to HD<br />

on this same date 10 years earlier.<br />

Congratulations to Team Jean for, once again, winning the Top Team Fundraising Award. The Top<br />

Individual Fund Raiser was Scott Anderson and the Top Corporate Team was Crossroads Hospice.<br />

Ed and Jeanie Chresos Skuza donated the E&J Reptile Show so participants could enjoy an<br />

up close encounter with various reptiles and have their pictures taken. Thanks to Subway,<br />

Romeo’s Pizza, Heinen’s, and CVS (all of Twinsburg) as well as Discount Drug Mart of<br />

Reminderville for the generous donations of food and beverages.<br />

The following sponsors are also recognized for their generous support: National Sponsor Lundbeck,<br />

Regional Sponsors Crossroads Hospice Foundation and Cross, Wietfeldt, Brockway & Splendorio. Other<br />

major sponsors included Apple Growth Partners, Specialty Lubricants Corporation, DB Homes, Industrial<br />

Mold & Machine and A Sign Above.<br />

Dave Kuhary served as Volunteer Chair of this event. The Chapter is grateful to the Walk Committee and the<br />

many volunteers who helped with registrations, donations, raffles, set up, tear down and fund raising. Some<br />

of these volunteers included college students from the University of Akron, Ohio State University and Bowling Green State University, led by youth coordinator<br />

Amanda Cox with the University of Akron. For information on the 2013 Walk, please check the Chapter’s website at www.hdsa.org/neoh for updates.<br />

ADVOCACY CORNER<br />

Huntington’s <strong>Disease</strong> Parity Act Update<br />

We are up to 142 cosponsors of H.R. 718 in the House including six Members from Ohio, and 11 cosponsors of S. 648 in the Senate! We need y<strong>our</strong><br />

help to secure additional cosponsors. Go to www.hdsa.org/advocacy to learn more, and then add YOUR voice by using HDSA E-Advocacy Center,<br />

at www.hdsa.org/takeaction.<br />

The Huntington’s <strong>Disease</strong> Parity Act of 2011 is important for all people affected by Huntington’s disease. If enacted into law, this bill would make it easier<br />

for people with Huntington’s disease to receive Social Security Disability and Medicare benefits.<br />

Special Focus: Senate<br />

Neither Senator Sherrod Brown nor Senator Rob Portman are yet<br />

cosponsoring S. 648. Please contact their offices in Washington, D.C.<br />

and ask them to cosponsor S. 648, and help individuals affected by HD<br />

gain access to Disability and Medicare coverage.<br />

Ohio Senators healthcare staffer information:<br />

Name Staff Email Staff Phone<br />

Sherrod Brown allison_rochford@brown.senate.gov (202) 224-2315<br />

Rob Portman brian_riedl@portman.senate.gov (202) 224-3353<br />

To fix these problems, we need to redouble <strong>our</strong> efforts in support of the<br />

Huntington’s <strong>Disease</strong> Parity Act of 2011 (S 648/HR 718), which will ensure<br />

that individuals with HD have the res<strong>our</strong>ces and care they need by:<br />

• Compelling SSA to update the guidelines used to determine disability<br />

for an individual with HD, and<br />

• Waiving the 2-year waiting period for Medicare once an individual<br />

qualifies for Social Security Disability.<br />

If y<strong>our</strong> loved one has been denied Social Security Disability (SSDI or SSI),<br />

HDSA may be able to help. Please contact Jane Kogan at the National<br />

Office in New York City at jkogan@hdsa.org if y<strong>our</strong> loved one fits the SSA<br />

eligibility criteria for Social Security Disability, but the application was<br />

denied by Disability Determination Services.<br />

HDSA on FACEBOOK!<br />

Huntington’s <strong>Disease</strong> Society of America (HDSA) Great Lakes Region


PROFESSIONAL EDUCATION COMMITTEE REPORT<br />

A recent meeting titled “24 hrs for Huntington’s <strong>Disease</strong>” took place at the<br />

College Club in Cleveland on October 4 and 5 to sample and debate current<br />

Huntington’s disease research. In recognition of Eva Weissman’s many<br />

contributions, this meeting was designated “The Eva Weissman Symposium.”<br />

The two-day event was organized by three faculty members from Case<br />

Western Reserve University including Dr. Alan Tartakoff (Pathology/Cell<br />

Biology), Dr. Xin Qi (Physiology and Biophysics) and Dr. Maria Hatzoglou<br />

(Nutrition).<br />

Eight visiting guests, three local speakers and an audience of about 70<br />

participated in this intense event that was sponsored by Lundbeck, Inc. and<br />

the Cell Biology Program of Case Western Reserve University.<br />

After introductory remarks by Dean Pamela Davis of the School of Medicine,<br />

Dr. Tartakoff provided a broad overview of the dilemma facing HD<br />

researchers, as well as those who study many other conditions. Even when<br />

the precipitating mutation or condition is well-defined, it is often unclear<br />

how to identify meaningful targets for therapeutic intervention. On the<br />

one hand, there is the problem of knowing how to identify items that are<br />

amenable to modification or improvement. A more profound difficulty is<br />

that only the earliest changes caused by the precipitating circumstances are<br />

likely to provide broadly valuable targets. Later changes, although possibly<br />

correctable, are less likely to be of major therapeutic value.<br />

For more information regarding this meeting and the subject matter,<br />

contact Dr. Alan M. Tartakoff at amt10@case.edu.<br />

THANK YOU<br />

ATTENDEES<br />

4th ANNUAL<br />

FORE-A-CURE<br />

GOLF OUTING<br />

The lecture program included:<br />

Dr. Martha Nance (Hennepin Medical Center, Minneapolis)<br />

“Why we CARE about Huntington’s <strong>Disease</strong>: One clinician’s perspective”<br />

Dr. Vahri Beaumont (CHDI)<br />

“Opportunities for Huntington’s <strong>Disease</strong> therapeutics and PDE inhibition”<br />

Dr. Gerardo Morfini (University of Illinois in Chicago)<br />

“Mechanisms underlying loss of axonal connectivity in HD”<br />

Dr. Xin Qi (Case Western Reserve University)<br />

“Protection of Mitochondrial Function in HD”<br />

Dr. Bruce Lamb (Cleveland Clinic Foundation)<br />

“The Role of Neuronal-Microglial Communication in Alzheimer’s <strong>Disease</strong>”<br />

Dr. Sanjay Pimplikar (Cleveland Clinic Foundatioin)<br />

“Neuroinflammation, Cognitive Decline and Alzheimer’s <strong>Disease</strong>”<br />

Dr. William Yang (UCLA)<br />

“Pathogenesis of Selective Neurodegeneration in HD: Insights from Designer<br />

Mouse Models”<br />

Dr. Elena Cattaneo (University of Milan)<br />

“Huntingtin from evolution to pathology - through stem cells”<br />

Dr. Juan Botas (Baylor College of Medicine)<br />

“Functional analysis of transcriptomic changes in HD”<br />

Dr. Clotilde Lagier-T<strong>our</strong>enne (UCSD)<br />

“Antisense Oligonucleotide Therapy for HD”<br />

Dr. Rick Morimoto (Northwestern University)<br />

“Proteostasis Dysregulation by Chaperone Competition in<br />

Neurodegenerative <strong>Disease</strong>s”<br />

The subject matter concerned:<br />

1) Therapeutic strategies (how to stop production of the<br />

mutant huntingtin protein, how to interrupt certain specific<br />

consequences of its expression, etc.).<br />

2) The basic functions of the huntingtin protein, which is conserved<br />

through evolution but appears not to be essential for development.<br />

3) Relatively unrecognized aspects of the disease, including<br />

“inflammation” of brain tissue, which is a well-recognized<br />

feature of Alzheimer’s <strong>Disease</strong> - and therefore exemplified the<br />

value of bringing together investigators that study different<br />

neurodegenerative diseases.<br />

Thank you to all “4th Annual Fore-a-Cure Golf<br />

Outing” attendees! This year’s event, held at Mallard<br />

Creek Golf C<strong>our</strong>se in Columbia Station on June 30,<br />

was another successful event.<br />

Participants enjoyed a beautiful day while playing<br />

at a different c<strong>our</strong>se this year. There were many<br />

returning guests from previous years as well as many<br />

new faces that enjoyed delicious hamburgers and<br />

steaks from Silver Service Catering.<br />

Congratulations to The Tim Palmer Group who won<br />

this year’s outing! A very special “thank you” is in<br />

order for Lundbeck, OverDrive, Parkview Federal and<br />

for all of <strong>our</strong> other wonderful sponsors.<br />

For information on next year’s venue, contact<br />

Mackenzie Platten at mackenz76@aol.com.


FACILITIES FOR<br />

HUNTINGTON’S<br />

DISEASE TESTING AND<br />

GENETIC COUNSELING:<br />

Genetics Center<br />

MetroHealth Medical Center<br />

2500 MetroHealth Drive<br />

Cleveland, OH 44109<br />

(216) 778-4323<br />

Center for Human Genetics<br />

University Hospitals of Cleveland<br />

11100 Euclid Avenue<br />

Cleveland, OH 44106<br />

Suzanne DeBrosse, MD<br />

Duane Culler, MS, PhD<br />

(216) 844-3936<br />

Division of Medical Genetics<br />

Akron Children’s Hospital<br />

One Perkins Square<br />

Akron, Ohio 44308<br />

Thaddeus W. Kurczynski, MD PhD<br />

(330) 543-8792<br />

Susan A. Woods, M.S., C.G.C.<br />

Certified Genetic Counselor<br />

(330) 543-8792<br />

swoods1@chmca.org<br />

Cleveland Clinic<br />

Genomic Medicine Institute<br />

Desk NE-50<br />

9500 Euclid Ave<br />

Cleveland, OH 44195<br />

Amy Shealy, MS, CGC<br />

Genetic Counselor<br />

ph: (216) 445-1251<br />

CLEVELAND CLINIC COMPREHENSIVE<br />

HUNTINGTON’S DISEASE CLINIC<br />

Location: Cleveland Clinic<br />

Center for Neurological Restoration, U3<br />

1950 East 89th Street • Cleveland, OH<br />

Clinic is held first Tuesday of each month<br />

For an appointment or for more information call (216) 444-3596<br />

Online at www.clevelandclinic.org/neurorestoration<br />

UNIVERSITY HOSPITALS<br />

HUNTINGTON’S DISEASE CLINIC<br />

University Hospitals Neurological Institute<br />

Location: UH Foley Elderhealth Center<br />

3619 Park East Drive, Suite 109 • Beachwood, OH 44122<br />

For an appointment call (216) 464-6445<br />

METROHEALTH<br />

Interdisciplinary team approach for individuals with Huntington’s disease<br />

MetroHealth Medical Center<br />

2500 MetroHealth Drive • Cleveland, OH 44109<br />

For more information or for an appointment call (216) 778-4323<br />

www.metrohealth.org<br />

WANT TO KNOW MORE ABOUT<br />

HUNTINGTON’S DISEASE?<br />

The national website at www.hdsa.org is the best res<strong>our</strong>ce for the most recent information<br />

on HD. From this site, you can link to other sites such as HDYO which is a new organization<br />

that provides information and education along with support for young people affected by<br />

HD. Another great site is HD BUZZ, which includes Huntington’s disease research news in<br />

plain language, written by scientists for the global HD community.<br />

Publications are also available for free, or for a nominal fee. They can be downloaded from<br />

www.hdsa.org/publications or obtained by contacting Anita Mark Paul, HDSA Information<br />

and Fulfillment Coordinator, at (800) 345-4372, ext 219, or by email at amarkpaul@hdsa.org.<br />

HOUNDS FOR HUNTINGTON’S<br />

DOG WALK EVENT<br />

A special gathering of 25 dogs and 40 of their fans took place on August<br />

25 at the first ever “Hounds for Huntington’s Dog Walk” at Hardesty Park<br />

in Akron. HDSA was pleased to partner with One-of-a-Kind Pet Rescue in<br />

Akron to raise awareness of Huntington’s disease and the need for pet<br />

adoption.<br />

This event was made possible thanks to sponsors including the Bemis<br />

Company Foundation on behalf of their MACtac – Stow, OH location,<br />

Lundbeck Inc. and Klein Tools Charitable Foundation. A special thank you<br />

is also in order for Bill Delgado and his graphics class at Cuyahoga Valley<br />

Career Center for creating posters and flyers for this event.<br />

The title of “Top Dog” was given to Super Cooper owned by Beth and<br />

Mike Housiauxsteward. Cooper raised more than $1,100 for Huntington’s<br />

disease. The Ice Cream Eating Contest was won by Talulah, whose owner<br />

Tiffany Cousino, HDSA Social Worker, could not be more proud. Bowser,<br />

owned by Juanita Deptowicz, Walk Chair, won the best trick division, and<br />

Gus the Bulldog was not only the second place fundraiser, but also won<br />

the Dog/Owner look- alike contest.<br />

Firstgiving pages will be open<br />

until November 25 for those<br />

who want to support y<strong>our</strong><br />

favorite canine. Visit the Chapter<br />

website at www.hdsa.org/neoh,<br />

click on the link to the “Hounds<br />

for Huntington’s Dog Walk” and<br />

select the hound you want to<br />

support. You can also view and<br />

purchase photos from this event<br />

which were taken by Becca<br />

Borrel of Photobec.com. Becca<br />

graciously donated her services<br />

and pet costumes for the<br />

morning and is also donating<br />

back a portion of the print sales.<br />

This event raised more than<br />

$5,000 for HDSA.<br />

Super Cooper<br />

Additional details regarding this event can be obtained by contacting<br />

Juanita Deptowicz at deptowiczj@gmail.com.


P.O. Box 14668<br />

Cleveland, OH 44114<br />

Northeast Ohio CHAPTER<br />

HDSA NORTHEAST OHIO CHAPTER<br />

BOARD OF DIRECTORS<br />

Helpline Number 440-742-1284<br />

President: Daniel J. Hostetler, J.D. – Smithville<br />

Vice President: Mackenzie A. Platten – Middleburg Heights<br />

Secretary: Christine A. Paternoster – Middleburg Heights<br />

Treasurer: Cory A. Baughman, CPA – Cleveland<br />

Donald L. Barr* (Chairman, HDSA National Board of Trustees) - Chesterland<br />

James Crawford, J.D. – Lakewood<br />

Shelly Hameed – Grafton<br />

Wesley G. Johnston, Jr. – Cuyahoga <strong>Fall</strong>s<br />

Wesley A. Johnston, J.D. – Wadsworth<br />

Jesse M. Lis – Brunswick<br />

Mayur Pandya, D.O. – Solon<br />

Karen Rechenbach – North Olmsted<br />

Alan M. Tartakoff, Ph.D.* – Cleveland Heights<br />

David E. Waltermire* – Richmond Heights<br />

Eva G. Weissman* – Lakewood<br />

* Past President/Life Director<br />

Social Worker<br />

Tiffany Cousino, LISW<br />

Helpline: (440) 742-1284<br />

tcousino@hdsa.org<br />

Happenings <strong>Newsletter</strong><br />

Cheryl M. Roche, Editor<br />

Phone: (440) 476-4706<br />

cheryl.roche@roadrunner.com<br />

Eva G. Weissman, Editorial Consultant<br />

Phone: (216) 226-6633<br />

evagw@att.net<br />

GREAT LAKES REGION<br />

Deborah Boyd – Regional Development Director<br />

PO Box 72<br />

Richland, MI 49083<br />

Phone: (269) 629 5452<br />

Fax: (269) 629-4205<br />

dboyd@hdsa.org<br />

NATIONAL OFFICE HDSA<br />

Louise Vetter – CEO<br />

505 Eighth Avenue #902<br />

New York, NY 10018<br />

Phone: (800) 345-4372<br />

Fax: (212) 239-3430<br />

www. hdsa.org/neoh

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