By Katie DeLargie
Thanks to YPAHD, (Young People Affected by HD), Valerie Mallock and I had the chance to go the Huntington’s Disease Society of America convention in Dallas this past June. It was a fantastic experience!
When I first arrived, I couldn’t believe just how many people and how many families were there. The first day was the National Youth Alliance Day, which is the equivalent of our YPAHD Day. I didn’t know many people, but they were really welcoming.
Valerie & Katie before the Gala Dinner
During the convention, Valerie and I also had lots of conversations with families. Although everyone has their own unique story, we all feel the same way about the disease. It really showed me how connected everyone is.
The highlight of the weekend was definitely the closing gala, which included a candle-lighting ceremony. Everyone had glow sticks. As the organizers lit each candle, a different table would crack their glow sticks until the entire room was lit up.
It was amazing to see all those lights, representing so many people touched by this disease. We were all in one room, all feeling the same way, all affected by Huntington’s in some way, shape or form. Being there together was just a beautiful moment.
I came away from the convention feeling very empowered, especially by the research sessions. Our scientists are working very hard to figure out this disease, and several drug companies are starting human trials, including some new trials this month. There is definitely hope!