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For those that haven't read Dr. Marsha Miller's excellent article covering the 2007 HSG Clinical Research Symposium for HDSA's website, here's the link:
The Inaugural HSG Clinical Research Symposium was a Success
Marsha L. Miller, Ph.D., December 5, 2007
I am MOST PROUD of HDSA National Youth Alliance member Katie Moser who was a keynote speaker at this symposium! I have had feedback from at least a dozen people telling me how TERRIFIC and motivational Katie's speech to this group of our top researchers was! As you will read, Katie listed several areas in which she believes there needs to be more research: juvenile Huntington’s Disease, the psychological, sociological, and cultural affects of HD, supplements and nutrition, exercise and stress, sleep, and alternative therapies. AMEN KATIE! Hands down, Katie is quickly becoming one of THE TOP sought out people to speak on behalf of all Huntington's Disease families!
For anyone wanting a copy of this article, you could contact Anita Mark-Paul at HDSA on extension 214 and request that she mail you a copy. Or attached is my copy and paste onto a Word document that you can use for sharing with HD families this month who don't have access to a computer. The attached article is 6 pages full of updates which I'm sure will provide hope for all our HD families as 2008 begins!
Once again, thank you HDSA for these excellent articles by Dr. Miller!
Attention Florida Families
The above article ends with: Plans are already in progress for a second annual symposium to be held on November 15, 2008, in St. Pete Beach, Florida.
Leslie Briner had told me the next research symposium would probably be in this area next year.........FANTASTIC! I'm sure the Planning Committee might need some local help both setting up and during the meeting from the CoE, Chapters & Support Groups. So stay tuned if you want to volunteer. However, since HD families are invited to attend these symposiums, please circle this date on your brand new HDSA 2008 Faces of Huntington's Disease* calendars!
I just shared with a friend how this date of November 15th is symbolic to me. That will be the 10th 'anniversary' of my Kelly dying from Juvenile HD. I'm hoping the 2008 symposium will announce either the CURE or a drug combination guaranteed to slow down the progression of HD. LOL if I know my daughter, it will.....she's up there working her magic to try and make something important happen on that day!
Love & Happy Holidays!
Jean
PS - For anyone wanting to see all 12 calendar pages on the 2008 HDSA Faces of Huntington's Disease Calendar, which is on sale for $20.00 on HDSA's Holiday Market Place, you can view them and order a calendar on this link. We all need a calendar each new year. Why not create awareness in schools: give one to your teacher or hang one in your dorm. Or hang one in your office at work! Don't forget one for yourself too!
https://secure2.convio.net/hdsa/site/Ecommerce/269306696?JServSessionIdr012=o9lh0lzp71.app5a&VIEW_PRODUCT=true&product_id=2161&store_id=2061
https://secure2.convio.net/hdsa/site/Ecommerce/269306696?JServSessionIdr012=o9lh0lzp71.app5a&VIEW_PRODUCT=true&product_id=2161&store_id=2061
If that link doesn't take you directly there, try: http://www.hdsa.org/site/PageServer?pagename=holidaystore click on "Order Yours Today" then click on "More Information" to see all 12 months!
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