From the President � Barry Kahn

Recap of my 1st Convention Experience

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


   The 16th Annual Convention of the Huntington's Disease Society of America was held in San Diego, June 29 thru July 1.   I would like to share with you some of the highlights of my first HDSA convention, and hopefully convey to you the hope that Marilyn and I came away with.  

   The opening session consisted of two parts - the first part featured Welcoming Remarks from Donald A. King, Ph.D., Chair, HDSA Board of Trustees; John Madden, Ph.D., Chair, 2001 Convention Steering Committee; W.D. "Sandy" Sanford, President, HDSA's San Diego Chapter; Senator Dede Alpert, California State Senator; and Barbara T. Boyle, HDSA National Executive Director/CEO, who spoke about this year's Convention theme, "Fulfilling the Promise."

   The second part of the morning session was a Family Services and Care Forum, hosted by Athena Diagnostics.   The panel included: Lisa (Youth), Phil (person with HD), Pam (At risk), and Frances (Spouse).   Each presenter, with the help and encouragement of Jane Paulsen, Ph.D., Chair; and Mark Jacobson, Ph.D., Facilitator, told their own personal story about living with HD.   It was so moving that we are planning to present a similar panel at our Illinois State Convention in April so that each of you will have an opportunity to experience what we did.  

   The afternoon sessions consisted of workshops and breakout sessions where you had the opportunity of attending what is of interest to you.   Marilyn and I attended Family Planning: What are all my options? - hosted by Andrea Zanko, MS; Tested Negative-hosted by Guerry Peavy Ph.D. (Marilyn); and Tested Positive/Newly Diagnosed-hosted by Joanne M. Hamilton, Ph.D. (Me).  

   A reception was held later that evening where you had a chance to meet new people and share stories.   It was a wonderful, enlightening first day!

   Saturday began an unbelievable day of research update (which is what we all want).   Astra Zeneca hosted a research forum called "From Models to Medicine" and covered the following topics:

   Can you imagine all of this in one session?   It was a lot to absorb, but what hope!   It made us proud to know that we (the Illinois Chapter) are doing our part!

   Before breaking for lunch, recognition was presented to chapters for their contributions to the research alliance.   The Illinois Chapter was one of the chapters recognized.   We should all be very proud of that achievement.  

   Saturday afternoon sessions again included workshops and breakout sessions.   Marilyn and I attended Clinical Drug Trials for HD, Legal Planning for HD: The earlier the Better, and Advanced HD Research.   (We decided to split up so that we could share what we learned).   We agreed that all of the sessions were worthwhile.   Other sessions offered were Nursing Homes and Assisted Living, Enhancing Caregiver Skills and many others.  

   Saturday evening was the Generation 2000 Gala: Reception, Dinner, Awards and Dancing.   It was wonderful to see so many young people actively involved.   The National Youth Alliance held a successful silent auction.  

   I am proud to say that the Illinois Chapter received another award - for the Best Non-event "A Party with a Purpose" - thanks to Ruth Igyarto.  

   There was a moving presentation by the Generation 2000 Committee reviewing the year's success in achieving the financial goals to make this the Last Generation with HD!   Most notable contribution was $1,000,000.00 given from one very good friend to another in hopes of finding a cure.   The $1,000,000.00 will be used as a matching fund for all monies raised for Generation 2000.   Now that's a friend!

   Then it was time for dancing and boy can our HD family dance (including a table dance by Dr. Christopher Ross who agreed for a $1,000 contribution.   What a guy!)   It was a wonderful evening.

   Sunday morning, in between our good-byes, we attended some more breakout sessions.   Marilyn was very moved by the Adult At-Risk group she attended (we have 3 children at risk), while I attended the open HDSA Board of Trustees meeting.   We met up at noon for the Closing Ceremony, where we once again saw new and old faces.  

   This was our first convention and truly a memorable and uplifting experience.   We met so many wonderful people that are a part of our HD family.   We were very impressed with the work that was done to put this together.   There was definitely something for everyone.  

   We are planning to attend next year' Convention in Columbus, Ohio which will be held May 31-June 2, 2002, and hope that you can all join us.   I guarantee that you will walk away with hope, information, and experience first-hand a truly memorable happening!


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Created: Sept. 3, 2001
Last updated: Dec. 1, 2010