New York, NY (June 10, 2020) – Due to the COVID-19 pandemic, the Huntington’s Disease Society of America (HDSA) transitioned the 35th Annual HDSA Convention, which was scheduled to be in New Orleans, into a virtual event on June 4-7, 2020. In addition to overcoming the challenges of the pandemic, the unique virtual event allowed guests who might not otherwise been able to travel to New Orleans due to health and expense to opportunity to attend sessions. Click here to watch all recorded sessions.
HDSA scheduled forty sessions over the four-day virtual Convention, and the HD Community came out in full force. More than 1,500 unique email registrants joined the Convention, and on average, there were 345 viewers per session. Impressively, participants from 93 nations around the world participated in the global online experience.
“Honestly, it never occurred to us not to hold Convention this year,” said Louise Vetter, HDSA’s President & Chief Executive Officer. “When COVID-19 made New Orleans travel impossible, our focus shifted to creating a virtual event that included world-class presentations without losing the extraordinary connection and emotion which the HDSA Convention is known for each year.”
The Virtual Convention featured nearly all of the regularly scheduled Convention programming with some surprise special guests. The Thursday, the Welcome Reception included a virtual concert featuring performances by Marc Scibilia, The Mammals and Dave Hause. Marc Scibilia paid tribute to the 80th Anniversary of Woody Guthrie’s “This Land Is Your Land” with his beautiful acoustic rendition of the iconic song.
On Friday, the education and support sessions began and included all the popular presenters normally seen at an HDSA Convention. Dr. Ed Wild & Dr. Jeff Carroll from HDBuzz.net delivered yet another entertaining and very informative “Ask the Scientists Anything” session. The virtual workshop was so successful that HDSA and HDBuzz will produce more throughout the year on a regular basis. Friday night was capped off with the NYA Talent Show hosted by Jennifer Simpson, LCSW and Katie Moser.
On Saturday, HDSA’s Chief Scientific & Mission Officer Dr. George Yohrling hosted the Research Forum which included updates from Annexon Biosciences, Wave Life Sciences, Roche/Genentech, HDBuzz and a Clinical Trials Showcase featuring CHDI Foundation, uniQure, Triplet Therapeutics and Neurocrine Biosciences.
On the fourth and final day of the Virtual Convention, more sessions and support groups were conducted with incredible attendance numbers. The Virtual Convention Closing Ceremony program on Sunday night revealed that Spokane, Washington will be the site for the 36th Annual HDSA Convention location in 2021.
The culminating event was the presentation of HDSA’s National Awards to HDSA South Carolina Affiliate (Affiliate of the Year), Autumn Furnisen (Youth/JHD Award), Massachusetts & Rhode Island Chapter (Chapter of the Year) and Jennifer Brown (Person of the Year). Marjorie & Woody Guthrie’s daughter Nora Guthrie made a surprise appearance to present Bill Kline with the Woody Guthrie Award and Jack Griffin with the Marjorie Guthrie Award. The Closing Ceremony concluded with the emotional Candle Lighting Ceremony where HDSA recognized the entire HD Community and then a fun-filled virtual dance party.
Throughout the four-day Virtual Convention attendees had the opportunity to connect on the HDSA Convention app, as well as visit the Virtual Exhibit Hall. Click here to visit the HDSA Convention page at HDSA.org/convention.
The 35th Annual HDSA Convention was sponsored by Presenting Sponsors: Genentech and Teva Pharmaceuticals – Gold Nonprofit Sponsor: CHDI Foundation – Silver Sponsor: uniQure – Bronze Sponsors: Adira Foundation, MassMutual, Neurocrine Biosciences, Voyager Therapeutics, Wave Life Sciences – Friend Sponsors: Annexon Biosciences, Spark Therapeutics and Vaccinex.
Thank you to everyone who attended and supported the Virtual 35th Annual HDSA Convention! We look forward to seeing you in Spokane, Washington next year on June 10-12, 2021!
VIRTUAL HDSA CONVENTION BY THE NUMBERS
- 4 DAYS, 40+ SESSIONS
- 1,536 UNIQUE EMAIL REGISTRANTS
- 942 APP DOWNLOADS
- MORE THAN 6,200 LIVE VIEWS
- AVERAGED MORE THAN 365 VIEWERS PER SESSION
- 645: MOST ATTENDED SESSION (HDBUZZ)
- 3,211 UNIQUE VISITORS TO VIRTUAL EXHIBIT HALL
- VISITORS FROM 93 COUNTRIES
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. Today, there are approximately 41,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.
The symptoms of HD are described as having ALS, Parkinson’s & 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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