Hi! My name is Erin Pryce, and I have Huntington's Disease. My grandmother, dad, and uncle have all died from the disease. I am the last person in our family who will have it. I've decided that I don't just want to wait around until I get sick. I want to have as much fun as I can, and I want to help raise money for research. This is a picture of me from last year's HDSA Team Hope Walk with my prize for raising the most money.
This is a very critical time to raise money for research. Last 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 the reduced huntingtin has any actual affect on the disease, like delaying or reducing symptoms.
In January of this year, I began participating in active research trials (not for the aforementioned drug because those haven't started yet and people are clamoring to get into it). 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 (even sober). The second 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 shouldn't have been. It's only mildly painful. They asked me to come back and do it again in March, and it went just as smoothly.