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28th Annual HDSA National Convention A Great Success
While the families who attended the 28th Annual HDSA National Convention in Jacksonville, Florida last week might have disagreed about their favorite convention moments, the overwhelming consensus was that this was the best HDSA Convention yet.
Starting with vibrant meetings of chapter and affiliate leaders, NYA members and social workers on Thursday; the official Convention activities kicked off with a rousing opening ceremony welcome from HDSA Northern Florida Affiliate President John Smith, and a thought-provoking keynote address by Dr. Mark Holder on the science of "happiness."
One of this year's new additions to the program, the HDSA Chapter and Affiliate Awards Luncheon, followed the opening ceremony After everyone had enjoyed a nice luncheon, NFC Chair Arik Johnson and HDSA's Nancy Rhodes announced the names of the chapters and affiliates being honored for their outstanding work in nine categories. (For details of awards and pictures of the winning groups click here.)
After a break that allowed attendees to tour the expansive exhibit hall, Friday's workshops were underway, several of which were videostreamed live for people who could not attend the Convention in person. (To watch the archived videos click here).
The first day ended with a standing room only NYA Talent show, attended but more than 250 people. More than an opportunity to show off their individual skills, the NYA Talent show was the culmination of the NYA's fundraising efforts, with all proceeds to be used to provide scholarships to the HDSA 29th Annual Convention for NYA members who could not otherwise afford to attend. By the end of the Convention, taking into account the silent auction, the talent show, dance auctions and various other fundraising activities, the NYA had raised close to $10,000. A special NYA Fundraiser Sawgrass Golf Package is still up for bids (click here to view the package and place a bid).
Despite the heat and humidity, a large group of Team Hope Walkers assembled at 7AM, Saturday Morning, to raise awareness and funds as they walked along the River before returning to the hotel and preparing for the morning's Research Forum.
The heavily-attended Research Forum, which followed another of this year's additions, the research breakfast, featured a keynote address by Dr. Michael Hayden, one of the preeminent HD scientists in the world. Dr. Hayden regaled the audience with his personal story of growing up in South Africa, learning about HD, and dedicating his life's work to helping people with Huntington's -- in the laboratory working towards treatments and a cure -- and in hospitals, clinics and their homes on equally important caregiving initiatives. He then explained the work his team at Tea Pharmaceuticals. At the end of his speech Dr. Hayden received the 2013 HDSA Research Award for his contributions to HD science.
Dr. George Yohrling, HDSA''s Director of Scientific and Medical Affairs presented an update on the new HDSA Human Biology Research Program, which will be awarding its first grants this Fall. The HDBuzz Team, Drs. Ed Wild and Jeff Carroll then led the audience through a review of the current HD Therapeutics Pipeline.
Saturday afternoon's workshops ranged from caregiving techniques to a presentation of the new HDSA Law Enforcement HD Toolkit, new insights into JHD, and the always well-attended potential new therapies presentations. Sessions directed at helping chapter and affiliate leaders hone their leadership skills were also on the schedule, as well as an opportunity to meet the HDSA Board of Trustees, who assembled for a question and answer session.
The Gala was a mix of joy, tears, hope and celebration as HDSA National Awards were presented, (click here for details) and the annual candle lighting ceremony honoring those who have made great contributions to HD, and those who were lost reminded everyone why we were assembled and how much there is still to do. Ringing out the Convention on a joyous note, people danced until 1AM, and promised to see each other next year, at the 29th Annual HDSA National Convention in Louisville, Kentucky.
For the second year, Clinical Research Initiatives Day was held on Sunday. Family members had the opportunity to take part in one of five clinical research projects that had representatives on site. The HDSA Clinical Trials Ambassadors had a training session, and the last of the Convention attendees went home to share what they had learned and experienced with their chapter and affiliate emembers who did not have the opportunity to attend this year.
More details and more photos will be posted on the website inthe days to come.