Dr. Ed Wild and Dr. Jeff Carroll
Dr. Ed Wild and Dr. Jeff Carroll first provided an overview of HDBuzz, a website available in 13 languages that communicates the latest HD research in plain language. HDBuzz can be accessed at www.HDBuzz.net. Dr. Wild and Dr. Carroll then outlined five reasons why there is substantive hope for the HD community:
1) HD is the most curable of the incurable brain diseases.
2) The HD community is tightly knit and supportive.
3) HD researchers have a unique opportunity to study people with the gene who have not yet shown symptoms.
4) Having symptoms doesn’t mean it’s too late if we can develop effective treatments.
5) Science is cumulative.
Dr. Wild and Dr. Carroll also outlined five clinical trials that are in progress or will begin in the new year. Deep Brain Stimulation (DBS) is a common treatment for Parkinson’s. A small pilot trial involving five individuals has already happened in Europe. A larger multicentre trial to include more individuals is now underway, thus providing more definitive results. Amaryllis is a multicentre Pfizer trial of a PDE10 Inhibitor drug that may help neurons to communicate more effectively. Two Teva sponsored trials include Pride-HD (Pridopidine), which may help with movement symptoms, and Legato-HD, which aims to calm down the immune system in HD. The fifth clinical trial is the first huntingtin-lowering treatment trial in HD. Called ISIS-HTTRx, the drug will be injected into the spinal fluid and hopefully reach the brain, then tell the cells not to make the harmful huntingtin protein that causes HD. This is a world first for this method, which most HD researchers consider to be the most promising approach to treating HD. It is scheduled to begin in the first half of 2015. Dr. Carroll explained that the drugs being tested now have been specifically designed for HD. This is a big change. To prevent HD we all have to work together. Our best chance for success is when HD families, the Huntington Society of Canada, researchers and scientists act as a community. Dr. Carroll’s advice was to sign up now through EnrollHD.org so that you can be contacted when clinical trials are available. Dr. Wild and Dr. Carroll closed their session by quoting President Barack Obama after the financial crisis in 2009: It is time to “Grab a mop – let’s get to work.” We have never been as close as we are now.