Living With HD
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Friday, June 24
26th Annual HDSA National Convention
By the time HDSA Board of Trustees Chair Don Barr took the podium, the ballroom of the Sheraton Bloomington was packed with enthusiastic community members. After his welcoming remarks Don introduced HDSA CEO Louise Vetter, who spoke about new HDSA programs and the National Convention scholarship programs made possible through the support of Lundbeck, in addition to the local scholarship program supported by the host Minnesota Chapter of HDSA.
Louise asked all attendees to remember that they had a responsibility to take what they learn at the Convention and share it with community members back home upon their return. She also asked that they share the brochure everyone received (Update on HDSA Community Programs -- click here to download a copy) so that more people become aware of the services HDSA provides to anyone affected by Huntington's disease.
Minnesota Chapter President Bryan Viau gave the keynote address, "Empowering HDD Families." Bryan told the story of his family and how they mobilized after the diagnosis of his late wife Debbie, with HD. Bryan shared photos and stories of how Emily, BJ and he dedicated themselves to not only caring for Debbie, but doing everything they could to promote great awareness of HD, and to raise funds to support research and care programs through their epic Hoop-a-thons. Bryan's message was both moving and clear -- that everyone can get involved and make a difference.
Focus on the Family Care Forum
After a short break, Dr. Sam Frank introduced the Focus on the Family Care Forum. Dr. Frank, Stacey Hoffman (nutritionist with HDSA Center of Excellence at Hennepin County) , Sally Gorski (speech/swallowing therapiest with HDSA Center of Excellence at Hennepin County) and Chef Kurt Stiles addressed "Healthy Eating for the HD Family." They talked about the benefits of a family eating together, and ways in which a meal that was appealing to all family members could be modified to allow the person with HD to eat and enjoy it and what to do based upon the stage of the disease.
Chef Stiles demonstrated how to make different types of sauces to then different ways to serve the chicken depending on the person with HD's ability to chew and swallow. Stacey and Sally talked about ways to augment meals to provide extra nutritional calories as well. A booklet of recipes was distributed to the audience (click here to download).