Gene Veritas, author of the Cure HD blog, offers this eloquent tribute to his mother and his ongoing struggle with Huntington's. Gene describes himself as "a middle-aged writer living at risk for Huntington's disease whose passion in life is to stop HD and other neurological diseases from devastating individuals and their families". Reprinted by permission from Gene's blog.

In this editorial, Dr. LaVonne Veatch Goodman draws an analogy between passengers on a sinking ship who can choose between going down with the ship or leaping into a lifeboat, and Huntington's people faced with promising but unproven treatments.

PHAROS is an observational trial of people at risk for Huntington's. Patients are tested but not treated. Dr. LaVonne Veatch Goodman comments on the first PHAROS publication and argues that this tired old study should be stopped.

Researchers from the Max Delbrueck Center in Germay report promising results for a nutritional supplement derived from green tea. Summary by Dr. LaVonne Veatch Goodman.

Dr. LaVonne Veatch Goodman explains what endpoints are in clinical trials and why different endpoints are used in different HD drug trials.

After looking over the schedule of the upcoming CHDI conference Dr. LaVonne Veatch Goodman draws an analogy between the drug development process and a symphonic production.

As drugs enter clinical trials for Huntington's, it's time to learn about and get involved in the process that will promote early access (compassionate use) for patients who desire access to drugs before the FDA approval process is complete. In this article, Dr. LaVonne Veatch Goodman reports on a new FDA plan to allow early access to drugs and reviews the history of early access in other neurodegenerative diseases.

Researchers discover important new clues about how trehalose protects cells from stress, adding further support for trehalose as a potential treatment for Huntington's Disease. Summary by Malcolm S. Casale, Ph.D.

Every six months we review data gathered from HDDW trial participants. While doing this review I also read a book about Admiral James Stockdale who had been a Vietnam prisoner of war, and I drew a connection between the experiences of HDDW participants and the wisdom that has come to be called the Stockdale Paradox.

The research measure of disease progression utilized in Huntington's patients is the Unified Huntington's Disease Rating Scale (UHDRS). Because frequent UHDRS testing is not possible in the usual office setting, another secondary objective of HDDW therapy trials is to define an appropriate set of measures that can be used in the primary care setting and correlate as best as possible with UHDRS. For this purpose, HDDW will provide each trial participant (who must also have a dedicated helper) with web-based and centrally organized tests for motor, cognitive, behavioral and functional capacity components. Serial results will then be supplied (in readable form) to each participating physician, who may in turn supply this information to the individual. It is the HDDW goal that these measures can reproducibly be used in the medical office setting to assess individual patient response. It will be the individual participant's rate of disease progression, and specifically not the average of the group population that is to be the measured and reported to the treating physician.