Posted August 25, 2008, by LaVonne Veatch Goodman M.D.

Xenanine (Tetrabenazine) was approved by the FDA earlier this month, but it will take several more months for the drug to be available in pharmacies.  During this time Prestwick Pharmaceuticals, the sponsoring drug company will begin manufacturing and distributing it, and they will need to put significant effort into educating doctors and pharmacists in its proper use.  Don't be afraid to use this drug if your chorea warrants it, but make sure you educate yourself about the side effects too  . .

posted August 4, 2008 by LaVonne Veatch Goodman, M.D.

Dimebon is by far the best news of this summer.  Positive reports from Medivation Inc. and the Huntington Study Group (HSG) from their Phase 2 trial in Huntington's are encouraging.  Indeed if degree of benefit seen in this Huntington's trial approaches that seen in Alzheimer's, this could be a very big advance.

In this article, we discuss results for both reported trials, and speculate on how soon this drug might reach people if further Phase 3 trials in the U.S. confirm effectiveness. We further suggest that a successful Dimebon trial could also lead to advances in biomarker discovery and validation.

by LaVonne Veatch Goodman M.D. posted June 15, 2008

Participation in good clinical studies and trials is the only way to get treatments for Huntington's disease. And efficient enrollment is the only way to get these treatments to Huntington people more quickly.  HDTrials.org is a web effort intended to speed and improve communication about clinical trials for our community.  By signing up on this site you can receive broadcasts and information about clinical trials in various geographic areas as soon as they begin. Thousands of participants will be needed. We have the opportunity and the power, through this and other efforts to speed enrollment in trials that can bring treatments to our families more quickly.

Posted June 30, 2008

The Genetic Information Nondiscrimination Act (GINA) was signed into Federal law on May 21, 2008, a full 17 years after the legislation was introduced.  When more than a year from now it is enforceable and finally trickles down to Huntington's people, GINA will help prevent discrimination by employers and medical insurers -- but only for those without symptoms, and within certain limitations. It is important to know what GINA does --and does not do.