For Immediate Release
Contact: Christopher Cosentino, Director of Marketing & Communications
Phone: (212) 242-1968 x229


Huntington’s Disease Society of America Hosts the 2nd Largest Convention in 31 Years


New York, NY (June 2016) – The Huntington’s Disease Society of America (HDSA) welcomed nearly 930 guests to the 31st Annual HDSA Convention in Baltimore, Maryland on June 2nd-4th. Held at the Hyatt Regency Inner Harbor, the three-day event was the second most attended Convention in the organization’s history.   The vast majority of attendees were individuals from Huntington’s disease (HD) families, but they were joined by a global roster of researchers, social workers, clinicians, volunteers and advocates.

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. Every child of a parent with HD has a 50/50 chance of carrying the faulty gene that causes HD. Many describe the symptoms of HD as having, ALS, Parkinson’s and Alzheimer’s diseases – simultaneously.

“The Annual HDSA Convention is known for the extraordinary amount of valuable HD research and care information, but it is the magic and incredible bond created by the HD community at the largest gathering of this type in the world that makes Convention such a special event,” said Louise Vetter, HDSA’s CEO.  “We are grateful to all of the sponsors, speakers, exhibitors and, most importantly, families who traveled to Baltimore to fuel the power and hope of the HD community.”

HDSA kicked off this year’s Convention on Thursday Night with their signature Team Hope Walk, followed by an Ocean City-themed Boardwalk Bash Welcome Reception where guests enjoyed delicious food, games and raffle prizes.

Radio host, author and 30-year caregiver Peter Rosenberger delivered an inspiring keynote address on Friday morning before families went off to take advantage of the valuable workshops that the HDSA Convention has to offer. On Friday night, HDSA’s National Youth Alliance (NYA) entertained guests at the annual NYA Talent Show where funds were raised towards NYA Convention Scholarships.

Saturday’s Research Forum provided promising HD science updates from world-class researchers. Speakers included: Walter Koroshetz, MD, Director of NINDS; Robert Pacifici, PhD, Chief Scientific Officer at CHDI; and Ed Wild, MD, PhD, & Jeff Carroll, PhD, from Those in attendance also received in depth information on several clinical trials during the Clinical Trials Showcase.

The HDSA Convention Gala on Saturday night featured the traditional blue light ceremony as guests paid tribute to all who have fought and continue to fight this devastating disease. National awards were given out to: HDSA Person of the Year Krissi Putansu; HDSA Marjorie Guthrie Awardee James Valvano; Woody Guthrie Advocacy Awardees the HDSA National Youth Alliance Advocacy Board (Morgan McLane, Amanda Butterworth, Melissa Ryant & Angela Mabry); HDSA Youth Awardees Kirsten & Kierra Wood; and HDSA Excellence in Care Award Madeline Harrison, MD.  Retiring volunteer leader Steven Seekins was also recognized with an Award of Appreciation.

Special thanks to the event sponsors: Teva Pharmaceuticals, Lundbeck, MetLife, Enroll-HD, Kindred Healthcare, Broda Seating, Ionis Pharmaceuticals, Novacorr Healthcare, Vaccinex, Sanofi Genzyme and Wave Life Sciences.

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, 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 or call (800) 345-HDSA.