About a month ago, Gene Veritas reviewed Alice Wexler's truly amazing book "The Woman Who Walked into the Sea; The Making of a Genetic Disease". Using real historical examples, Wexler points out the challenges faced by families in the past, and why the public and personal family reaction to Huntington's disease has been (and still is) so profound. And Gene's excellent review shows us that learning about the past can help us understand -- and combat -- the stigma that HD faces today.

My advice is to read this review first, it will make it easier emotionally; then go out and get this book.

A couple of years ago we reviewed articles on eye movement abnormalities as potential biomarkers for use in Huntington clinical trials. This week we report on a pilot study out of Imperial College in London that combines specific eye movements with a cognitive (thinking) task. This type of test appears sensitive to predicted disease stage even before symptoms. And in more good news, a further refinement of this test is already being studied in the much larger 360-person CHDI-sponsored TRACK-HD trial begun January 2008.

TRACK-HD is designed to look for and refine best biomarker tests that can speed HD drug trials. Dr. Dan van Kammen, chief medical officer at CHDI, has suggested we might have the answers about this test --and several others that could be used with it -- in the one or two year time frame.

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 . .

When NASA, the National Aeronautics and Space Administration launches a rocket into space they call it "lighting the candle". This is the awesome moment after years of careful planning, testing and retesting -- they decide to push the ignition button. Launching a drug into clinical trial for Huntington's is a similar situation. It takes years of science, planning, testing and retesting before decisions are made to start a clinical trial.

How are decisions made to launch a drug candidate into clinical trial? Have you wondered why CHDI has not yet decided to "light a candle" with one of their drug candidates? As a recent observer at a CHDI working group, I had a chance to look at part of what goes into this decision-making process. What does it take to light a candle? It depends . . .

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.

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.

In a new publication from pharmaceutical giant Medtronics Inc., scientists describe a technique for RNA interference that decreases mutant huntingtin protein by 80% without impairing normal protein production. In theory, if this type of technique could be employed for all Huntington's individuals it might be an improvement on the ISIS Pharmaceuticals Inc. product which also can decrease mutant huntingtin production by 80%; but at least (as so far reported) also has the potentially unwanted side effect of decreasing normal huntingtin production.

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.

Recruiting has begun for 2CARE, a large PHASE 3 trial testing Coenzyme Q-10 in Huntington's disease. At its conclusion we will hopefully learn a definitive answer whether high doses of this supplement can slow the progression of Huntington's. The Huntington Study Group is recruiting for more than 600 participants for this trial that is slated to last as long as five years, but will be stopped earlier if benefit is shown during a shorter time.

On a less positive front, several recent trials of Coenzyme Q-10 for Parkinson's have not confirmed the benefit that an earlier trial had suggested . .

With his permission, I gratefully post an interview by my good friend Gene Veritas with Dr. C. Frank Bennett, Senior Vice President of Research at Isis Pharmaceutical. If all goes as planned, Dr. Bennett predicts 2010 as the date for first phase human clinical trials for Huntington's.

It sounds possible -- I can hope he's right.