Posted January 12, 2010 by LaVonne Goodman M.D.

Just before New Years, Kimberly Gibson an enthusiastic gene positive young woman from Atlanta, Georgia sent this message on behalf of a group working for Huntington's: "We have a few questions. How realistic is a cure within ten years? What kind of treatment do you predict us having in five? What would it take to make it happen?"

What kinds of treatment are realistic in 5 or 10 years is more than I can know, or guess.  But I am pretty sure I know what it will take and who will "make it happen".  It will be people who work with passion -- just like her.

Who has the right to decide how couples at risk for Huntington's should have children?  Or more specific to the debate now occurring in Europe: What rights do couples have when requesting reproductive procedures (PGD) for the purpose of having a gene negative child?  What are the issues in this debate -- and who has the right to decide?

Posted November 3, 2009 by LaVonne Goodman

We need 60 more good Huntington's people to get the ACR16 trial done in North America. Do you know that 90% of the more than 400 Huntington's participants from the European trial have petitioned centers so that they may continue ACR16 compassionate use after the trial?  This remarkably high number suggests that Huntington families in Europe believe that ACR-16 may be doing something very good.

Why are we in the U.S. and Canada risking our chance to get this drug?  Do you know that slow enrollment is the reason 2 out of every 3 clinical trials in the U.S must close before enough information is gathered to bring a new drug forward to the FDA -- because the drug company runs out of money.  Each day that we don't enroll is adding to the cost of this multimillion dollar trial. 

If we don't fire up 60 more people to join this trial, we may be risking our chance to get this drug.

Posted October 28 2009 by LaVonne Veatch Goodman

Huntington's care provided by Huntington Study Group (HSG) professionals and Huntington's Disease Society of America (HDSA) is almost exclusively limited to specialty centers.  This is exactly what our fund-raising and federal research dollars support: Expert medical care and social service support given by Centers of Excellence. This is all well and good, but . .

What about families -- who probably represent the majority of Huntington's patients worldwide -- who don't have a center within geographic reach?  What about those families whose medical care and support services are all too often poor to non-existent?  Do our Huntington's organizations believe that responsibility for care ends at the center's door?