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Huntington's Disease Advocacy Center - HDAC Article: - The 2008 HDSA Convention
HDAC Article: - The 2008 HDSA Convention
The 2008 HDSA Convention
-- Marsha L. Miller, Ph.D.     print-friendly ]

Steve and I attended the HDSA convention, which was held in Pittsburgh, Pennsylvania from June 5-8, 2008. It was one of the more lively conventions with good news on the research front, activities for everyone, good turnout from a growing and active National Youth Alliance, and friendships made and renewed.

The convention officially opened on Friday, June 6th, but we were there on Thursday so I could speak to the chapter leaders about the new HDSA website. I have the responsibility for the research section which I hope will be educational and a source of hope to HD families. Two new features will be an up-to-date chart of the potential therapies in the pipeline and an interactive database of clinical trials. The chart is up now and the database is in progress.

Liz Weber announces new
HD documentary
The Focus on the Family Forum was truly outstanding this year. Genetic counselor Betsy Gettig moderated the forum which was composed of her ‘dream team,’ – members of HD families who speak to medical students, genetic counselors, and the general public about their experiences of having HD in their families, being at risk, testing, and living with Huntington’s Disease. Despite the sadness and loss that comes with Huntington’s Disease, all of the participants were committed to living positively and finding the humor in daily living. As they told their stories, it was clear that audience members related to what they had to say.

Attendees were moved by a segment from a new documentary about Huntington’s Disease which is preparation. The documentary was introduced by Liz Weber, president of HDSA NW Chapter. To learn more and watch part of the documentary go here: .

The research news is encouraging. There are three Phase III clinical trials started or starting in 2008: CoQ10, creatine, and ACR-16. ACR-16 is a dopamine stabilizer and in a phase II study they got motor, cognitive, and psychiatric improvement. This new compound is remarkable in that if dopamine levels are too low, it will raise them and if they are too high, they will lower them. So far it has been found to have few side effects. I'm excited about this study! The Dimebon study is finishing up. Results will be announced next month and if they look good, there will be a Phase III trial. Keep your fingers crossed on that one!

CHDI continues to develop and study promising compounds in mice and hopes to start clinical trials within a year. Those compounds are particularly exciting because they are designed to precisely target problems in HD, which means that if they are successful, they are likely to be very significant.

Dr. Jane Paulsen was delighted to announce that the National Institute of Health has renewed Predict-HD’s funding. Predict-HD is finding and validating subtle changes in movement, cognition, and brain imaging in pre-manifest, gene positive volunteers. This will lead to better measures for clinical trials and a better understanding of when to start treatments when they become available. We all owe our thanks to the Predict-HD participants who are playing a big role in progress towards treatments.

HDSA's Board Members
I think one is also behind the podium
The Research Forum was more problematic this year. There was a great deal of information and more than 300 members of the audience were attending their first convention. The speakers presented a lot of information with supportive graphics, but it was clearly difficult for many audience members to follow everything that is going on and a number of the questions indicated some confusion.

Audience members were naturally concerned with the delay in the FDA approval of tetrabenazine. However, some clearly believed that TBZ had been shown to treat the underlying disease when the trials actually tested the drug’s ability to reduce the symptom of chorea.

CHDI updated the audience on progress in drug development and preclinical testing of potential drug candidates. However, some audience members mistakenly thought that HDSA funds had been diverted from the Coalition for a Cure and that the Coalition’s results were more likely to lead to a cure.

Funds have not been diverted from Coalition research which is focused on basic lab research designed to answer key questions about what goes wrong in HD. The goal is to improve understanding of the problems that new drugs will need to target. The HDSA is committed to continuing this program.

CHDI is funded by a foundation and its efforts are complementary. CHDI’s work has focused on drug development and testing in animal models of HD. Last year, CHDI hired Daniel Van Kammen, M.D., Ph.D., as medical director. He will lead the efforts to bring drug candidates to clinical trials and secure FDA approval if they are found to be safe and effective.

Each year speakers in the research forum update the HD community of progress with the strategic plan to bring treatments from the lab to the clinic. The take home message from the 2008 convention is that all bases are being covered with experienced researchers and collaborating organizations who can 1) discover existing drugs and develop new ones which target pathogenic processes in HD, 2) conduct preclinical testing, and 3) carry out clinical trials and who are experienced in getting approval for drugs which prove to be safe and effective.

More details on research news from the convention will be available on the Lighthouse.

The Board of Directors made itself available to attendees who wanted to meet them and ask questions. On Saturday, the Board held its annual meeting and elected three new members, Steve Ireland, Marcy MacDonald, and Steve Seekins.

The Awards Dinner and Banquet was exciting as usual. The HOPES students from Stanford University won the Giving a Voice to HD Award. Two members, Faren and Danny were present to receive the award. Faculty advisor, Dr. William Durham had an emergency and could not attend; he asked me to stand in for him so that is why I am in the picture.

Betsy Gettig received the Marjorie Guthrie Award.

Marie Nemec was finally given an award for her rides which have inspired $468,000 in donations to date. An award was also presented to her fellow rider, Charlotte Reicks, who has accompanied her on eight of her nine rides.
The HD Person of the Year award was given to Bob Leck for his role in the NYA, chapter activies and online support as well as his example of someone who is living positively with HD.

The JHD Award was giving to Jacey Mukka who has created a series of HD videos to raise awareness. The videos can be found on YouTube.
HOPES students Faren Clum and Danny Neumann accepting the award on behalf of all of the students, Marsha accepting the award for Dr. WIlliam Durham, faculty advisor.

The banquet and awards part of the evening was brought to a close by the Light Ceremony which is a symbol of memory and hope. Following the Light Ceremony, the dance was introduced with the traditional song “We are Family.”

Photos by Steve Ireland

- published -0-6--2008