Living With HD
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Although several weeks have passed since the close of the 26th Annual HDSA National Convention in Bloomington, Minnesota, the energy and excitement generated, and the enthusiasm expressed by those who attended is still ringing in my ears, and motivating everyone associated with HDSA to push even harder to improve and expand our programs and services for everyone affected by HD.
More than 1,000 HD community members (from 42 states and 13 foreign countries) joined the HDSA staff, clinicians, researchers and other health professionals, making this the largest gathering in HDSA history. Significantly, more than 200 people received scholarships that allowed them to come to the Convention, thanks to the generosity of Lundbeck, and the incredible efforts of the host Minnesota Chapter.
From CEO Louise Vetter’s opening remarks highlighting the many new HDSA community programs, through Bryan Viau’s moving keynote, truly a call to action for anyone facing HD, and the comprehensive program of symposia, workshops, and social events, it was abundantly clear that there are more resources and opportunities for the HD community than ever before.
There was something for everyone. The Focus on the Family Care Forum featured a cooking demonstration on how to prepare an appropriate meal for a loved one with HD that the entire family would enjoy. The Research Forum featured novel approaches to developing therapies for HD, and news of the new international Enroll-HD study, as well as an enlightening explanation of the “normal” job of huntingtin, the protein that causes HD.
On Friday and Saturday there were nine tracks of workshops geared to the different needs of our families. New to HD? There were workshops addressing the basics; A caregiver? We had sessions that identified specific needs and gave practical tips for dealing with them; A young adult with concerns about relationships and children? Several seminars covered these types of issues. Interested in new potential therapeutic approaches to HD? Six companies previewed their work at the New Therapies Symposium. Interested in participating in a clinical trial? All currently-recruiting trials were featured in workshops, and representatives of the trials were available in the Exhibit Hall
For the first time this year three of our workshops were “webcast,” allowing people at home to listen to the speakers and see the presentation materials in real time.
Many workshop presenters spent time at the “Ask the Experts” table, a new feature this year. This allowed community members to ask these researchers, clinicians and other specialists questions pertaining to their own situation – something that’s hard to do in a large forum or workshop.
I don’t want to give you the impression that we were in serious discussions for three days. Friday night’s Chapter Awards Reception, was an opportunity to catch up with friends and honor the work of several outstanding chapter and affiliates. The NYA Talent Show was standing room only and Saturday night’s gala included a chance to recognize HDSA’s national award recipients, and remember those we have lost in a moving candle lighting ceremony. Following dinner, the younger members of the crowd danced until 1AM.
I hope you will take the time to visit the national websiteand look at the photos, powerpoint presentations from the workshops and videos of the Opening Cermonies, Focus on the Family Forum and Research Forum a posted on the site.
If you attended the Convention, please make sure to share your experiences with friends, family members and neighbors. If you were not able to join us, I hope you will mark June 8 -10 2012 on your calendar and make an effort to attend the 27th Annual HDSA National Convention in Las Vegas, Nevada.
Thanks for all you do to bring Help for Today and Hope for Tomorrow to everyone affected by Huntington’s disease.
Donald L. Barr
HDSA Board of Trustees