The Huntington Study Group (HSG) is planning its first ever clinical research symposium. Though it is only for one half of a day, only research and clinical trial efforts that are directly relevant to people will be presented. No studies on mice or yeast allowed here. And more good news, the public is invited!

Per an announcement on July 26, "MRSSI, Inc. announced today that Daniel P. van Kammen MD, PhD has joined as Chief Medical Officer. As such he will be responsible for the clinical development efforts of CHDI, Inc. CHDI was established in 2003 as a non-profit entity pursuing a biotech approach to finding therapies for Huntington disease (HD)".
Read more...

In this article published in the July 25 Journal of Neuroscience, Dr. Bezprozvanny and colleagues show that tetrabenazine is neuroprotective. It delays onset of disease symptoms and saves neurons in the YAC mouse model of Huntington's. They also show that L-dopa, a drug commonly used in Parkinson's is harmful. This is a great example of translational research, or laboratory experiments that can lead to application in HD people. Dr. Goodman hopes that these results will encourage greater use of this drug and add incentive for prompt FDA approval.

from July 18 Science Daily

Better Sleep May Put Huntington's Disease Sufferers Back On Track This news release from Cambridge, England reports on what many patients already know: sleep is disturbed in Huntington's. Researchers show that treatment of HD mice with available drugs (fewest toxic effects from alprazolam or Xanax) helps sleep, improves cognition and rousability, which is probably a measure of apathy. They go an important step further stating that " treating disrupted sleep in long-term neurologically ill patients is important" for both the patient and the caregiver.

It sounds too good to be true, but there it is in May 2007 Nature magazine's article on medical foundation spending: High Q and CHDI were on the receiving end of $50 million in foundation money in 2006. To put this into perspective, the High Q/CHDI profile is on the same page as the Bill and Melinda Gates Foundation, and ranks #6 in the world among foundations that spend money on medical causes. This foundation is in the majors, and this is great news for HD people.

Important research reported in May 2007 Nature Magazine shows that Huntington's turns a normally protective enzyme into one that likely accelerates disease progression. Dr. Cynthia McMurray and colleagues show that OGG1, an enzyme that normally repairs damaged DNA, seriously malfunctions and causes a further increase in the already enlarged CAG repeat number in HD brain cells. Dr. Goodman believes the real and practical "take home" message from this important study is that HD people may now have two good reasons to take creatine.

NeuroSearch, the drug company that is sponsoring ACR-16 announced progress on clinical trials for this drug in the U.S. This means that the FDA has accepted phase II clinical trial results from Europe, and given the go-ahead for proceeding directly to phase III in the U.S. If this drug is as good as first studies suggest, foregoing another phase II trial in the U.S. will save years of time getting this drug to people.

Through the creation of their St. Louis Huntington's Disease Foundation, Sandy and Alan McDonald have found a unique way to advocate and promote care for Huntington's. In the article below Alan tells the story. "Hat's off" to this remarkable couple.

By now you've heard the disappointing news that TREND-HD, the phase III clinical trial testing ethyl-EPA for Huntington's has failed. The facts are pretty clear, EPA was no better than placebo, and in the following weeks, the HD community took a deep breath and accepted that this was the end of the omega-3 story. But should it be? In this article Dr. Goodman suggests a second look-- and wonders if the wrong omega-3 was tested.

We welcome Dr. Roger Carnes M.D., a retired obstetrician-gynecologist from Washington State as guest editor/writer for HDDW. Here he reviews the process of genetic testing on embryos for couples at risk for Huntington's, and reports on information obtained from an interview with Dr. Mark Hughes, whose laboratory performs all the testing performed in the U.S.