HUNTINGTON’S DISEASE SOCIETY OF AMERICA SETS NEW ATTENDANCE RECORD AT THE 34TH ANNUAL HDSA CONVENTION
1,225 GUESTS FROM AROUND THE WORLD JOINED THE HDSA FAMILY IN BOSTON
New York, NY (July 1, 2019) – The 34th Annual Huntington’s Disease Society of America (HDSA) Convention was held in Boston, Massachusetts on June 27th-29th at the Boston Marriott Copley Place. With 1,225 guests, the 34th Annual HDSA Convention set a new attendance record breaking the previous record (1,046) in Los Angeles, California held last year. It was announced that the 35th Annual HDSA Convention will be held in New Orleans, Louisiana on June 4th-6th, 2020.
“The 34th Annual HDSA Convention not only set a new attendance record, but it also confirmed the momentum of the HD community that is actively working to improve the lives of everyone affected by Huntington’s disease,” said Louise Vetter, HDSA’s President & CEO. “With the incredible advancements in HD research and care, HD families are engaged and invigorated to go out and do something. We could not put an event of this magnitude together without the help of our amazing sponsors who we are grateful to call our friends in the fight against HD.”
The festivities kicked-off on Thursday with the Team Hope Walk through the historic streets of Boston, which led to the carnival-themed Welcome Reception. During the Opening Ceremony on Friday morning, Dr. Jang-Ho Cha, Dr. Marcy McDonald and Cheryl Sullivan-Stavely led a moving panel discussing the dynamic relationship between research and HD families.
Friday afternoon featured the Cheers-themed VolunCheer Luncheon where the Society cheered the extraordinary efforts of the HDSA volunteers. Friday night’s HDSA National Youth Alliance Talent Show raised more than $35,000 for the NYA Scholarship Fund which sends children and young adults impacted by HD to the HDSA Convention each year.
The education tracks were jam-packed with workshops from world-class speakers, including Nobel Laureate Dr. Craig Mello who delivered the Keynote Address during Saturday’s Research Forum. Also during the Research Forum, Dr. Ed Wild & Dr. Jeff Carroll from HDBuzz gave an in-depth and entertaining update on HD research and the promising clinical trials currently underway and in development.
During Saturday night’s Gala Reception, HDSA presented the following National Awards: Seth Rotberg and Therese Crutcher-Marin (Woody Guthrie Advocacy Award), Hallie Kile (HDSA Youth Award), Dr. Darren Monckton and Dr. Vanessa Wheeler (Researchers of the Year), HDSA New Jersey Chapter (HDSA Chapter of the Year), HDSA Connecticut Affiliate (HDSA Affiliate of the Year), Sitrin Health Care Center (Inaugural Long Term Care Award), Dr. Samuel Frank (HDSA Excellence in Care Award), Patricia McLane & Morgan McLane (Marjorie Guthrie Award) and Alexandra Boothby (HDSA Person of the Year). The HDSA Convention closed with the emotional candle lighting ceremony paying tribute to the entire HD community.
The 34th Annual HDSA Convention was made possible by the generous support of all its sponsors: Genentech and Teva Pharmaceuticals (Presenting Sponsors), Lundbeck (Platinum Sponsor), CHDI Foundation & Enroll-HD (Gold Nonprofit Sponsor), Ionis and uniQure (Silver Sponsors), MassMutual SpecialCare, Voyager and Wave Life Sciences (Bronze Sponsors), and Archcare, BioTek reMEDys, Broda, Next Step Healthcare, PTC Therapeutics, Sanofi, Spark Therapeutics, UMass Medical School, Vaccinex and WilmerHale (Friend Sponsors).
Select workshops were recorded and will be available on www.HDSA.org in the coming weeks.
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Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes HD. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of HD are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.
The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families. To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America visit www.HDSA.org or call (800) 345-HDSA.
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