Breakthrough Drug and Research Trials

If you ever wonder if your donations make any difference, I can assure you that this one will. On June 2nd, I will be walking to raise money for Huntington’s Disease research. In December, Huntington’s made national headlines with a research breakthrough. A drug that targets the mutant huntingtin protein with antisense RNA was found to reduce the amount of protein in a small clinical trial. The next step is to get Phase Two of the trial to sites all over the country to determine if it has any actual effect on the disease, like delaying or reducing symptoms.

In January of this year, I began participating in active research trials to have a better chance at getting into the Phase Two trials when they begin (which people are already clamoring to get in). The first was Enroll HD, which is trying to get comprehensive data on everyone with the disease. It involved an interview about family and personal history, as well as a neurological test to look for symptoms. The neuro tests definitely succeeded in making me feel both stupid and symptomatic. I cannot walk backwards in a straight line or recite the alphabet backwards (yes, I was sober, but it’s a legitimate question). The second trial was HD Clarity, which involved getting a lumbar puncture to remove 20 mL's of spinal fluid to check for the huntingtin protein and some other biomarkers in pathways that may be involved in HD. I was definitely scared going into it, but I ended going back to do it a second time. This is good practice because the aforementioned drug will be delivered through spinal injections. Please consider that even small donations can have a big impact.