Melinda Wagner
Representing the HDSA NYA at the 4th World Congress on HD is a huge accomplishment on my timeline of my contribution to curing HD. My absolute favorite sessions were the Hot Topics in HD, which covered the pros and cons from professionals on controversial subjects and then time for questions and sharing opinions/experiences. The first session discussed whether or not predictive testing for HD should be offered to children under 18 years old. Even though Fiona Richards strongly opposed testing children because of the anxiety, when the moderator said he was interested in hearing from the youth, Heather Alimossy and I seized the opportunity to stand up, introduce ourselves as HDSA NYA, share our family stories and ultimately support testing for mature children with responsible parents especially if JHD is even a remote possibility. (Side note: the next day at lunch Fiona Richards was forced to sit with us and she didn't look too happy when she realized who she was sitting down next to. At first, I was terrified but we took the opportunity to get to know each other better and make it through our meal) The second hot topic was mouse studies are critical prior to human drug trials, which I originally agreed with but now I'm undecided after hearing people say they don't want to wait for mouse trials when in a lot of cases what works in mice might not work for humans and vice versa. Heather, on behalf of the NYA, asked them how they planned on getting participates to enroll for a study that hasn't been tested on animals first when they already don't have enough participation for current studies. I can't wait to discuss the hot topics with the rest of the NYA. Most importantly, we met representatives from the other HD youth organizations and have joined forces internationally in working together to finding a cure. It was invigorating to be in the midst of and apart of the hard work being done right now to cure HD. Quick shout out to BJ Viau for sharing his at risk story and representing the NYA in the first plenary session.