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?

In case you can be in Baltimore, Maryland on Saturday November 21, don't miss this one day symposium with many exiting presentations about clinical research. And for the first time this year a workshop on clinical trials will be given for Huntington families. Sign up today. It will be worth the trip.

And in a very special part of this event, Judy Roberson from Northern California will be a featured speaker.

We at HDDW are saddened by the death of Marie Portillo, who lived half of her too short life physically dragged down by juvenile onset Huntington's. But according to our good friend Malcolm Casale, Marie's godfather "She had quality of life 'til the end, as she was always cheerful and would join us in singing and readings. Part of this was due to her foundational belief that the cure was becoming available, and that all she had to do was hang on a little while longer."

Marie

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.

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?

Today after three-pronged efforts that included a few good folks from the HD family community, clinical investigators in the HART ACR16 clinical trial and the sponsoring drug company, Neurosearch is moving forward in its application to the FDA to provide drug to North American participants after they have completed the placebo controlled trial. It goes to show that the HD World can be moved -- if we all push together.

Those who have signed on at HDTrials.org now number almost 1000. But we will need many more than 1000 people to complete clinical trials now in progress and those that will be coming. Joining HDTrials.org, learning about clinical trials, and spreading the news are all important and positive steps forward - but they will accomplish little if we don't take the next steps to maximize participation.

Stem Cell therapy has remarkable potential as therapy for Huntington's as well as many other diseases. It brings hope for two types of related treatment: stem cell therapies to repair diseased brain cells and to generate new healthy cells.

But until recently the hope for this type of treatment for Huntington's seemed very far from reality. Now however, with advances in stem cell science and the improved ability to mass produce the millions of cells necessary for every transplant, stem cell therapy is on the move for Huntington's.

April 4, 2009 from Gene's blog at www.curehd.blogspotcom

Times are bad, but my wife and I have decided to borrow $75,000 to build a pool and fix up the house. It may sound crazy, but when you're faced with a devastating disease like Huntington's, it's important to enjoy life in the now. This is the topic of "In a time of crisis, the best investment of all," my latest entry in my blog. I'm now at the age when my HD-stricken mother started to show symptoms.