Convention Recap by Dave Hodgson

From the Fall 2001 issue of Hopes & Dreams, newsletter of the Illinois Chapter, Huntington's Disease Society of America.

     The Huntington's Disease Society of America's 16 Annual Convention was held in San Diego, CA this year, June 29th through July 1st at the Town and Country Resort and Convention Center.   This year's theme was "Fulfilling the Promise," which refers to the ongoing HDSA theme of making this the last generation of suffering for those with HD.   Friday's sessions, following the opening remarks by several National Trustees, included the Athena Diagnostics Family Services and Care Forum which included a panel discussion presented by Dr. Jane Paulsen and Dr Mark Jacobson.   Presenters included a person with HD, a caregiver, an at-risk person, and a youth representative.   Each gave their own perspective of what it is like living with HD.   One of the more memorable comments made by Frances, caregiver/spouse of a person with HD was, "Don't get lost on the heartbreak.   Rather, focus on the cure."

     We also listened to California State Senator Dede Alpert tell us of what California is doing for those with disabilities such as HD.   Like many states, California is dealing with important health issues such as expanding MediCal, medical coverage for all children, comprehensive medical coverage for those who are uninsured, long term care and patient/nurse staffing ratios, banning discrimination based upon genetic makeup, and home and community caregiver support services, including respite care for both the caregiver and the patient.   

      The Friday afternoon sessions featured workshops and breakout sessions from Living Positively with HD to Family Planning to Nutrition and HD, to Alternative Medicines for HD.  

     Saturday morning featured the AstraZeneca Research Forum, "From Models to Medicine" chaired by Dr. Chris Ross, M.D., chairman of the HDSA Scientific Committee.   He took us through an overview of HDSA Research and how scientists study all the different aspects of HD.   He assured us that, "HDSA brings different areas of scientific research together to effectively search for a treatment and/or a cure."   He continued, "As we learn the steps leading to cell death and symptoms, we can design therapies to interfere with the pathogenics of this disease and its effects on the brain."   Dr. Ross encouraged all of the convention participants to lobby for passage of Senate Bill S-723, which would undue restrictions placed on stem cell research.  

     We also heard from Leslie Thompson, Ph.D. on Alterations in Gene Transcription in HD.   Dr. Thompson was part of the original group that found the HD gene.   Dr. Henry Paulsen spoke about Lessons from Flies and Fish and the current research being conducted in biology which may give us a better understanding of HD and other polyglutamine diseases.   He briefly touched on the work being done at Northwestern University in Evanston, IL by Dr. Rich Morimoto and the common earth worm.   Dr. Robert Friedlander, M.D., spoke to us about his research on the Roles of Caspases in HD.   Caspases are a particular type of protein, and when activated, cut apart the normal functions of cells thus quickening the death of those cells.   His team is currently looking at blocking the function of caspaces through the use of caspace inhibitors, such as minocycne.   Hopefully, this type of treatment, if proved effective, might slow the progression of HD.   Dr. Karl Kieburtz, M.D., gave a presentation on Fetal Cell Transplantation regarding its interest and limitations, and then followed with an update on Huntington Study Group studies, including CARE-HD, PHAROS-HD, and PREDICT-HD.  

     The Saturday afternoon sessons included workshops featuring such subjects as Taking Care of the Caregiver, Talking to Kids about HD, End of Life Issues for Persons with HD, Clinical Drug Trials for HD, Depression and Suicide, and Advocating for HD.   The Saturday night dinner dance and awards presentation included two awards for the Illinois Chapter.   We were honored for a generous donation to the Chapter Alliance for the Cure, as well as the best non-event event, a birthday party given by a chapter member who asked that her invitees celebrate her birthday by writing checks payable to HDSA for research instead of giving her gifts.  

     This is the 9th National Convention that I have attended, and once again I found it uplifting and very educational.   If you have never attended the national convention, I urge you to try to make next year's event in Columbus, Ohio.   It will be held May 31 through June 2, 2002.    

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Created: Sept. 8, 2001
Last updated: Nov. 30, 2010