National HDSA Convention

Spring, 2014

The Buckeye Bulletin

HIGHLIGHTS OF THIS ISSUE

Hoop-A-Thon 2014 announced on page 1.

Speaker for Annual Meeting announced on page 2.

Cocktails at Clover-nook page 4

Advocacy Corner page 5.

Article about ENROLL-HD On page 6.

Memorials for loved ones on page 8.

The HDSA Shoot for A Cure Hoop-A-Thon will take place Satur-day, April 12th from 10am - 3pm. The 2014 version of this annual event will again be held at the Fairfield Mercy HealthPLEX at 3050 Mack Road, Fairfield, Ohio 45014.

The Ohio Valley Chapter seeks each year to set a new record for money raised in this major fundraising event for the chapter. This goal can be reached if all those concerned with finding a cure for HD step up and “take a shot” at this new record.

Current Corporate Donors

Hospice of Southwest Ohio

CBTS

The Leugers Group/Raymond James

Individuals can support the Hoop-A-Thon by several actions:

Gather pledges and sign up to shoot, or

Sponsor a shooter, or

Enlist a corporate donor for this year’s event to add to the current corporate sponsors listed above.

(Continued on page 5)

2014 HOOP-A-THON

Hoop-A-Thon 1

President’s Letter 2

From the Social Worker

3

Meeting Bulletin Board

3

Pendleton Art, Final Friday Tour Acknowledgements

4

New Tributes 6

Latest Research News

6

Memorials 8

Membership Form 9

Hoop-A-Thon Participation

9

INSIDE THIS ISSUE:

The Huntington Disease Society of America will hold its 29th Annual Convention, June 20-22, in Louisville, KY. Registration details, Scholarship opportunities, and a tentative agenda may be found at www.hdsa.org/convention.

National Convention Scholarship

Thanks to the generous support of Lundbeck, HDSA is pleased to offer scholarship opportunities to first-time attendees of the 29th Annual HDSA Convention who are not residents of Tennessee and Kentucky.

National Youth Alliance Scholarship

The NYA is also offering scholarship opportunities for NYA members (to join, go to www.hdsa.org/nya and fill out the membership form). Preference is given to first-time Convention attendees. NYA members who received a scholarship to the 2013 Convention are not eligible to apply.

Kentucky and Tennessee Residents Scholarship

HDSA is pleased to offer scholarship opportunities to Kentucky and Tennessee residents attending the 29th Annual HDSA Convention.

Page 2

LETTER FROM THE PRESIDENT

Dear Friends of HDSA, As I am writing this letter to you, we just held our HDSA Night at the Pendleton Art Center on Friday, January 31

th. As many of you know,

this was our 13th year we have “sponsored” a night at the Pendleton Building, which houses some 100 artists in the historic eight floor building. The HDSA Night at the Pendleton Art Center has become one of our premier events for fundraising and community awareness. Over 900 people, on average, course through the building on these events and learn about Huntington’s Disease. No other event that we participate in brings such awareness to such a large group of people. In addition to the community awareness, we raised close to $1,500 for Huntington’s disease! Speaking of things to come, we are looking forward to our annual Hoop-A-Thon on Saturday, April 12th, from 10am to 3pm at the Fairfield Mercy HealthPLEX. This will be our 13

th year in a row at this

incredible facility and we will be looking to top our record of $25,000 raised for Huntington’s. Now … the only way for us to do better than last year is to have more shooters or more sponsors. PLEASE. If you are reading this and think you could help out with fundraising (shooters, sponsors, etc.), call me at (859)655-6306 or email me at dan.leugers@raymondjames.com. This event is the most critical for our chapter. I would love to hear from you. Just a few weeks later, on Tuesday, April 29th, we are having our second annual Cocktails at Clovernook fundraiser at 6:00pm. This is a wonderful “Happy Hour” event that raised over $4,000 last year. Location of the Clovernook Country Club is 2035 West Galbraith Road. Come on out and have fun! Thank You, Dan Leugers HDSA Ohio Valley Chapter President

President Leugers reflects on the Ohio Valley Chapter mission.

WANTED: The Huntington's Disease Society of America, Great Lakes Region Team is looking for volunteers to assist with the planning of exciting events in Ohio to take place in the Fall of 2014 to support Huntington's disease. If you or someone you know is interested in becoming involved to help support our

mission to better serve the HD community, fund research and further advocacy & education, please contact Dan Leugers at dan.leugers@raymondjames.com today.

Plans are already in the works for the Chapter Annual Meeting which is scheduled for Saturday, May 17th, 2014 at 11am - 1pm at the The Beechwood Home, 2140 Pogue Ave., O’Bryonville. We are looking forward to hearing from speakers Kathleen Collins who is a genetic counselor at CCHMC, Andrew Burrow a geneti-cist at CCHMC, and a representative from Care Foam Seating.

Ohio Valley Chapter Annual Meeting

Page 3

From the Social Worker

We are so fortunate in the Ohio Valley area to have many gifted health care professionals available to work with our HD community. One benefit to the community, is having the professionals who work with HD become involved with each other to coordinate care and make sure all needs are being met as best possible. Over the past few years we have organized a clinic that is focused on genetic testing. Individuals interested in learning more about their genetic status are scheduled on a specific day each month at Cincinnati Children's Hospital. During the designated clinic appointment genetic counselors, along with Dr. Revilla, a neurologist, Dr. Andrew Burrow, a physician specializing in genetics, and I meet with the persons requesting information, counseling and possible testing. The neurologist Dr. Fredy Revilla was highlighted in a previous newsletter. I would like to take this opportunity to introduce

Dr. Andrew Burrow.

Dr. Burrow hails from Arkansas where he grew up, attended college and medical school. He moved to Cincinnati to complete a combined residency in both pediatrics and human genetics. He brings a very specific and unique knowledge to our HD folks. The genetics of HD is a challenging and involved area and the families that live with HD are fortunate to have such a qualified physician available to answer their

Mary B

eth B

ialick, MS

W

Continued on page 10

Meeting Bulletin Board

Ohio Valley Chapter Annual Meeting Saturday, May 17, 2014

11am - 1pm Beechwood Home

2140 Pogue Avenue Cincinnati, OH 45208

Further info. Phone (513)741-4372 FREE Parking - Follow Signs

Cincinnati Area Caregivers, Patients, & At-Risk Support Groups

Meeting Site Beechwood Home

2140 Pogue Avenue Cincinnati, OH 45208

3rd Saturday of month - 11:00 - 1:00

Contact Mary Beth Bialick (513)741-4327

Meet in the private dining room.

FREE Parking - Follow Signs

29th Annual HDSA Convention June 20 - 22, 2014, Louisville, KY

Go to www.hdsa.org/convention for details and to register for the

convention.

2014 Hoop-A-Thon April 12th — 10am - 3pm

Fairfield Mercy HealthPLEX 3050 Mack Road, Fairfield, OH

Page 4

Pendleton Final Friday Art Tour

The Ohio Valley Chapter hosted a Final Friday Art Tour at the Pendleton this past Friday, January 31st from 6pm - 10pm. The evening achieved the Chapter’s goal to provide an entertaining evening for visitors to the Pendleton Final Friday while educating the community about the needs of families living with HD.

The artists and managers of Pendleton Art Center deserve a special thanks for extending to us the invitation to participate in their Final Friday event.

The Ohio Valley Chapter also owes thanks to all the other participants in the evening’s tour, entertainment, and festivities. Through their efforts we were able to elevate the community’s awareness of HD and to raise $1,500 for the care and cure of HD.

A special “thank you” is extended to the following individuals and groups that were instrumental in the successful evening. This continued support of the Ohio Valley Chapter benefits many HD families.

Event Sponsor: The Leugers Group/Raymond James

Refreshments: Dan & Heidi Leugers, Brit Fisher, Ben Bessler, Karin & Kevin O’Donnel, Steve & Karen Leugers, Jim Leugers, Mary Jane Cassin & Jim Pashak

Musical Entertainment: Bill Church and 46 Long

HDSA Table: Al Hartman, Mary Beth & Howard Bialick, Rosemary, Reavill, Sue Elsasser & Becky Kelly

Musicians with President Dan Leugers

“COCKTAILS AT CLOVERNOOK” FUNDRAISER

PLEASE JOIN US FOR A FUN EVENING OUT AND A GREAT EVENT TO BENEFIT OHIO VALLEY HDSA!!

TUESDAY APRIL 29, 2014 AT 6:00 PM

CLOVERNOOK COUNTRY CLUB 2035 WEST GALBRAITH RD

CINCINNATI, OH 45239

COCKTAILS WILL BE AVAILABLE FOR PURCHASE (CASH OR CHECK, NO CREDIT CARDS)

COMPLIMENTARY HORS D’OEUVRES

BASKET RAFFLE AND SPLIT THE POT

ALL PROCEEDS FROM TIPS, BASKET RAFFLE

AND SPLIT THE POT GOES TO HDSA!!

Questions? Email Karen @ decksams77@yahoo.com

Page 5

The Huntington's Disease Parity Act of 2013 (S. 723/H.R. 1015) is important for all people affected by Huntington’s disease. If enacted into law, this bill would make it easier for people with HD to receive Social Security Disability and Medicare benefits. Go to www.hdsa.org/takeaction to contact Congress in a few mouse clicks! Special Focus: OH Senators Neither Senator Sherrod Brown nor Senator Rob Portman are currently cosponsoring S. 723, the Huntington’s Disease Parity Act of 2013. Please contact their offices in Washington, DC and ask them to cosponsor S. 723, and help individuals affected by HD gain access to Social Security Disability and Medicare coverage. Here is healthcare staffer information for the Ohio Senators:

Please let Jane Kogan know that you’ve made contact by cc’ing jkogan@hdsa.org on your email or letting her know about your call so that HDSA can follow up. If your loved one has been denied Social Security Disability (SSDI or SSI), HDSA May be Able to Help Please contact Jane Kogan at jkogan@hdsa.org if your loved one fits the SSA eligibility criteria for Social Security Disability, but the application was denied by Disability Determination Services.

Name Staff Email Staff Phone

Senator Sherrod Brown valarie_molaison@brown.senate.gov (202) 224-2315

Senator Rob Portman joe_shonkwiler@portman.senate.gov (202) 224-3353

ADVOCACY CORNER

Huntington’s Disease Parity Act of 2013 (S. 723/H.R. 1015)

The Hoop-A-Thon is a fun-filled, free throw basketball event to benefit HDSA. It brings together people of all ages to have fun and raise money to help find a cure and treatment for Huntington’s disease.

Funds raised at this annual event are used locally to provide needed services to families afflicted with HD. These services include access to a social worker who provides links to needed services and who supervises monthly support group meetings for these families.

To receive information about the event contact Dan Leugers at (859) 655-6306. (See page 7 for map to event.)

(Continued from page 1)

Page 6

By: George Yohrling, PhD, Director of Medical and Scientific Affairs, HDSA and Simon Noble, PhD, Director, Scientific Communications, CHDI Management/CHDI Foundation Enroll-HD is a worldwide observational study for Huntington’s disease families. It began in 2012 and now includes families in North America, Europe, Latin America, Australasia and parts of Asia. Enroll-HD will likely become the largest observational trial of any neurodegenerative disease in the world, and is only possible because of the unique collaborative spirit that exists among HD researchers and HD families around the globe.

(continued on page 7)

RESEARCH NEWS Note: The following press release is provided here for informational purposes only and is not intended as a recommendation for the company nor the procedure described. The press release has been edited for relevance and length.

ENROLL-HD: A Global HD Research Platform to Accelerate HD Drug Development

Scenes from the 2014 Christmas Party Left: Jeremy Dickson and family Below: Rosemary Reavill & Sue Elsasser Right: John Yacenvich & Grandson

NEW 2014 OHIO VALLEY TRIBUTES Benefactors

Judy O’Brien Daniel Walsh

Individuals

Karen Hammond Darlene Onyett

Golden

Bonni & Jeffrey Hines Richard Jackson

Dennis & Janet Martin Patrons

Your Name Here!

Families

Richard Kolmin Margaret & Mitchell Maggard

Jack & Viola Mapes Rebecca McCrady

Kevin McHugh Betty Thompson

Harold & Sue Ward

Century Club

William Brunner Jim Burg

James & Molly Nester Roger & Rosemary Reavill

Page 7

Enroll-HD is a potentially groundbreaking study that builds upon the knowledge gained from the COHORT study in the U.S., Canada and Australia, and the similar REGISTRY study in Europe. Like those studies, Enroll-HD is sponsored and managed by CHDI Foundation, a not-for-profit biomedical research organization dedicated to developing therapies that slow the progression of HD as soon as possible. The idea is that by combining the previous studies into one study all around the world with as many HD family members as possible participating, all taking the same tests at their annual study visits, the data and samples collected will mean a much more powerful study that can identify factors important in the course of HD progression. That gives researchers vital clues on what might make an effective therapy. The main objective of Enroll-HD is to speed up the development of new effective drugs to treat HD. The study will do this in a number of ways:

First, participants in Enroll-HD will provide clinical data and blood samples to help better understand how HD happens

in patients (because animal models can only tell us so much). All patient data and samples (after very careful de-identification so that they are anonymous) will be available to HD researchers around the world to answer critical questions about HD. The idea is to get as many researchers as possible working on HD.

Second, Enroll-HD will also serve as a platform to help improve the clinical care of people with HD. By comparing

clinical practice (things like physiotherapy, speech/occupational therapy, current drugs used, exercise and sleep patterns, etc.) in different sites and countries around the world in thousands of patients, clinical researchers will be able to see which sites or countries have patients who do better. They can then try to pick out what it is at those sites that helps patients do better, and establish new guidelines for the best clinical care for all HD patients.

Third, Enroll-HD will help recruitment for clinical trials of new drugs – the more that researchers know about the

thousands of participants within Enroll-HD (in a de-identified manner) the easier it will be to conduct better, smarter, and faster clinical trials of promising new drugs.

Enroll-HD is truly a family study, any member of a family affected by HD can participate, including:

People who have tested positive for the expanded huntingtin gene, whether or not they show any symptoms of the

disease.

At-risk family members who have not undergone genetic testing.

Individuals who have a family history of HD, but know they do NOT carry the expanded huntingtin gene.

Spouses/partners of family members with HD.

In February of this year, the Huntington’s Disease Society of America (HDSA) was pleased to announce its endorsement of

the Enroll-HD platform. HDSA believes that Enroll-HD is a new breed of patient registry, with the highest levels of

management, patient protection and commitment to sharing its data with scientists that can help make sure we understand

HD better, test potential drugs more quickly and ensure that we are providing the highest quality of care for HD families.

To support its endorsement, HDSA will be launching an educational campaign on Enroll-HD across its network of 54

Chapters and Affiliates nationwide. Clinical trial education is already a critical component of HDSA’s educational, research

and advocacy work. The Society’s 170 support groups, 40 social workers and specially trained Clinical Trial Diplomats and

Research Ambassadors provide ongoing education to HD families about the role of observational and clinical trials in

finding treatments for HD.

We appreciate that HD families are under enormous pressures just to make it through their daily activities, and that for some, participation in research studies is often too much to consider. However, for families who are looking for one effective way to fight back against HD and move the field of HD science closer towards treatments, joining Enroll-HD might be right for them. Since the launch of Enroll-HD we have seen tremendous participation by the HD community; to date, there are over 1,800 participants in the 52 actively recruiting Enroll-HD sites, around 1,300 of those in the U.S. alone. There are already more than 12,000 HD family members participating in the REGISTRY study in Europe, and the large majority of those will switch over to Enroll-HD over the next year or two. When all is said and done, we expect there to be 15,000 to 20,000 HD patients and family members at over 200 Enroll-HD research sites in 27 countries. Getting as many HD patients and families to join in this new HD research platform is essential to ensure we maintain the positive momentum the HD community has created over the past few years, in particular to encourage more and more pharmaceutical and biotechnology companies to invest their resources and innovative technologies into finding effective treatments for HD. Building and maintaining a global research platform like Enroll-HD will undoubtedly encourage these companies to seriously consider jumping into HD drug development. If you’d like to learn more about Enroll-HD or find a clinical site near you then please visit www.enroll-hd.org or

www.hdsa.org, and look out for the Enroll! newsletter on the HDSA website.

Page 8

Left & Left Below: Opening of Walk

Fairfield Walk

MEMORIALS

Andy Mittenholzer

From:

Jacqueline Schulz

Bruce Goins

From:

Charles & Cathy Dryden

Carey Lee Jacobs

From:

Beth & Pat Baird

William & Janet Blessing

James & Gloria Brown

William Brunner

Crawford Woods Elementary

Karen Hammond

Donald & Linda Hurley

Thelma Hymer

Nancy & Jeff Laymon

Ruth Pettitt

Lori Pierson

Elizabeth Polanka

Thomas & Carol Schaber

Gerald & Carol Schwegman

Brian Singleton

Diana Parker

From:

Arden & Patricia Parker

George Parker

“One of the most meaningful ways you can honor loved ones is with a

memorial donation to the Ohio Valley Chapter.”

Audrey Brosius

William Brunner

Deborah Bulger

Frederick & Deborah Bulger

Cynthia & Drew Fox

Marilyn Garrod

Wally Gillman

Barbara Hamm

Everett & Barbara Hamm

Karen Hammond

Kim & Tim Hemmelgam

Denise Holtzman

Carole Hulsmeyer

Mary Jacobs

James Kulhman

Kelly Lenz

Aunalee Moore

Ross & Aunalee Moore

Vicki Peters

Kurt & Cherry Poppe

Thomas & Susan Schenck

Jennifer Stewart

Rusty Tobin

Randall Reeves

From:

Ken & Iris Brewer

Terry & Mary Parker

Daniel & Ronita Parker

Jeffrey Marks

From:

Ronald & Lynn Cobb

Adrienne Compton

Paul & Charlene Drago

Carol & Norm Frazier

Mary Jane & George King

Larry & Annette Murray

Donald & Nancy Rabe

James & Beverly Reigel

Melanie Rothstein

Kenneth & Colleen Uckotter

Patt Flinn

From:

Anonymous

Keith Bassinger

Mary Jo Botts

G. Eileen Boyer

Nina Boyer

Right Above: Dan Leugers, Kurt Poppe, Dr. Revilla, & Friends at walk

Right: Mary Jacobs, Dr. Revilla, & Friends at walk

Page 9

Address

Name

Please enroll me in the quest for a cure of HD at the following tribute level. Amount

Benefactor Tribute

Individual Tribute

Family Tribute

Century Club Tribute

Patron Tribute

Golden Level Tribute

$15

$25

$50

$100

$250

$500

A N N U A L A P P E A L

The strength of our chapter has always been its members. This is no less true today than it was when we first began in 1970.

We recognize that it is only through the collective efforts of our family of HD supporters that we can achieve our goals and con-tinue to provide our HD families with the understanding and sup-

port they deserve.

Bill Me

Method of Payment

Check enclosed Please make payable to the HDSA/Ohio Valley Chapter.

Phone Email

3537 Epley Lane

Cincinnati, Ohio 45247

Phone: 513-741-HDSA

Thank you! You make a difference!

Huntington’s Disease Society of America Ohio Valley Chapter Donation

Signature I would like to volunteer for chapter events.

Help make our Hoop-A-Thon a record breaking event. You can do this in several different ways.

1. Plan on being one of the shooters on the day of the event. If you need a brochure to begin collecting pledges, contact Dan Leugers at (859) 655-6306 or email Dan at dan.leugers@raymondjames.com. Start now to gather pledges for your shooting.

2. Convince your friends, family, and co-workers to become shooters. Come out together and enjoy the camaraderie that this participation can foster.

3. Send in a donation to be applied to the Hoop-A-Thon fundraiser. If you know a shooter, tell us and we will apply your donation to his or her total.

4. Solicit a corporate sponsor for our event. We currently have sponsors at several levels of support including $250, $500, $1000, and $2000 levels. Again, if you know a business that is interested in supporting a worthwhile charity, the HD Hoop-a-thon is a fantastic opportunity. These corporate sponsorships can make a significant difference in the support of HD families.

Hoop-A-Thon Participation

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questions. Dr. Burrow works closely with the team in educating families about living with HD in their family tree. He is able to answer the many questions that arise for individuals living at risk.

The opportunity to have a physician spend time giving understandable information is necessary before people decide to test for the HD gene. Having a qualified geneticist guiding you through the process of learning about your genetic makeup, the way the HD gene is transmitted, and the meaning of the “repeat” number, is beneficial and necessary to individuals considering testing. Good information and the opportunity to ask questions and reflect on this information allows folks to make the best decision for them when deciding if they should test for HD. Dr. Burrow not only spends time caring

From the Social Worker Continued

Phone: 513-741-HDSA

HDSA’s Mission To improve the lives of

people with Huntington’s disease

and their families.

HELPLINE Greater Cincinnati

513-741-HDSA

OFFICERS Dan Leugers, President

Dennis Martin, Vice President Sue Elsasser, Secretary Ben Bessler, Treasurer

Rosemary Reavill, Family Service/Education

Al Hartman, Board Member Gary Dixson, Board Member Jeff Hines, Board Member

Bill Brunner, Board Member Kurt Poppe, Board Member Karen Sams, Board Member

CONTACTS Greater Cincinnati

Mary Beth Bialick, MSW 513-741-4372 West Virginia

Debbie Armstrong, 1-304-549-3266

BUCKEYE BULLETIN Rhonda Holscher, Editor

DISCLAIMER The Buckeye Bulletin is the official

publication of the Huntington’s Dis-ease Society of America, Inc., Ohio Valley Chapter, 3537 Epley Lane, Cincinnati, OH 45247 The Buckeye Bulletin attempts to

report items of interest to individuals with HD, their families, health care professionals, and interested friends and supporters. HDSA and the Ohio Valley Chapter

do not provide medical advice, nor do they promote, endorse or recommend any product, therapy, or institution. Please check all drugs, treatments, therapies and products with your phy-sician. Statements and opinions ex-pressed in articles are not necessarily those of HDSA, Inc. and the Ohio Valley Chapter.

Address Service Requested

for people but he is also a teacher, a researcher and a much published author in his field. He has shared his knowledge with us at past support groups and I am sure will make himself available again in the future. For more information on the monthly HD genetics clinic please contact me at the HD number, 513-741-4372 or Erin Mundt at Cincinnati Children's Hospital at 513-636-9626. Phone numbers to keep on hand: Ohio Valley Social Worker: Mary Beth Bialick (513)-741-4372 Genetic Counselor: Kathleen Collins (513)-802-2154 Local HD Clinical Trial Information: Erin Neefus (513)-558-6555

Support is only a phone call away at

741-4372