Huntington Disease Challenge?

I’m sure most of us have seen the most recent ALS challenge. It consists of eating a hot pepper and then challenging someone else to do the same. Which it may sound crazy, but it really is in the spirit of raising awareness. The first challenge was pouring an ice bucket on someone’s head back in 2015. I was shocked when I recently read that it raised 220 million dollars. That’s truly amazing. That money was able to go towards funding much needed research and well deserved. Most people aren’t very familiar with Huntington Disease. Which, I totally understand since I had never heard about it until my dad was diagnosed. It’s a combination of Parkinson’s, Dementia, and ALS. It is genetic and if one of your parents had the disease, then you are at a 50/50 risk as well. I was diagnosed in 2016 when I was 31. There is no cure and is a degenerative in nature. My father died 10 years ago from complications. I’m now in stage 2 and unfortunately my teenage son will be tested next month due to symptoms that he has developed. So needless to say I have a vendetta against the disease. Now, with that all being said. There is a lot of solid research, many different medications, and a ton of clinical trials for ALS, Dementia, and Parkinson’s disease individually. However, for Huntington Disease at any given time we may have only 2 or 3 trials and I’m pretty sure only 2 medications to treat our chorea. The rest of the medications that are often prescribed to us are to treat the psychiatric piece due to the changes in the brain. Which, I’ll be honest felt like more a guinea pig experiment. Please, don’t get me wrong I’m so grateful that each community has a lot of advocacy and resources. I mean the Michael J Fox foundation has done so much for not just Parkinson’s, but also other movement disorders. I just think we are in a major need for awareness. So, I was thinking the HD community could do possibly start on our own challenge. I know it has been attempted in the past, but unfortunately didn’t get too far. I’m not sure where one would even begin, but I’m willing to give it all I got! I’d love to hear opinions or feedback.