National Convention Recap

Reaching for Excellence in Care & Cure

by Stephen R. Clingerman, Ph.D.

From the Summer 2004 issue of Hopes & Dreams, newsletter of the Illinois Chapter, Huntington's Disease Society of America.

The 19th Annual Convention of the Huntington�s Disease Society of America took place June 11-13th at the Adams Mark Hotel in St. Louis, Missouri, with an approximate total of 480 attendees from 40 states. The Illinois delegation included a person with HD (sponsored by a generous chapter donor) and her husband and two at-risk children, seven chapter board members, and numerous other IHDSA members and their families.

The conference provided outstanding information on education, care, and research. The first morning�s presentations included opening remarks, exciting data revealing the potential importance of tetrabenezine in treating chorea (presented to the convention prior to publication or other professional presentation), and information on advocacy in government. The afternoon consisted of a forum on the best symptomatic care (speech, nutrition, physical and occupational therapy), and a choice of eight (8) specialized workshops. Workshops throughout the conference focused on various topics including being at-risk, being a person with HD, caregiving, talking to your children about HD, genetics, and medications. An interfaith time and reception concluded the first days� activities. The National Youth Alliance had its own concurrent program throughout the conference, and several of us noticed the consistent increase across national conferences in our teen and more recently pre-teen attendance.

Saturday morning�s conference centered upon research. In the attempt to �speed up� identifying clinical treatments and increase mutual cooperation, the Coalition for the Cure scientists now meet once-a-year in their subgroups and once-a-year as the entire group. Each of these five research subgroups of the Coalition for the Cure had one of their top scientists discuss the team:

While even pronouncing the names of some groups can be �a mouthful,� it is amazing to me how the top Coalition scientists make even complicated and technical research issues understandable to the attendees. Northwestern University and Chicago�s own Dr. Richard Morimoto (who just presented at our IHDSA conference in March) was the spokesperson for the second group. The second half of the morning included explications of the Center of Excellence by Dr. Peter Como (who also made several excellent presentations at our Illinois Conference this past March), the Cure HD Initiative (CHDI), a clinical research update by Dr. Martha Nance, and a summary by Dr. Gusella, discoverer of the HD gene and member of the national board of directors. The afternoon included two sessions of 16 workshops. The Saturday night Generation 2000 Gala included dancing, fellowship, honors and awards, and the Youth silent auction among the highlights.

Fourteen roundtable discussions on topics as diverse as fundraising, care, family planning, and research, were led on Sunday morning. The closing ceremony provided a fitting end to the conference. As you can see, these conferences are unforgettable, lifetime events. Make your plans for Atlanta, June 24-26, for the 20th Annual National Conference. Inability to pay does not have to be a problem, as there are some monies available to sponsor persons with HD next year. Stay tuned for details. See you in Atlanta.

Created and maintained by Renette Davis. Send comments to Renette by clicking here.

Created: Aug. 11, 2004
Last updated: Nov. 14, 2010