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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