2011 HDSA National Convention

Just wanted to write a note about my experience at the 26th Annual National Convention. It was my first year, and I was also a winner of one of the NYA Scholarships!! I must say, the days were long, but the memories will last me a lifetime! NYA day was full of so many new friends from all over the US and the world! Meeting everyone I had been friends with on facebook for so long was like meeting rockstars! It was an indescribable feeling to be in a room full of people from all over the world, who are paddling the same boat as myself. To feel accepted in a place where no one had to ask, WHAT IS HD?

We all became friends so quickly, meeting and sharing our triumphs and tribulations with one another. I life experiences and histories became part of this open book we all shared. From our loved ones suffering, the uncertainty of our own fates, and the nagging feelings we had of being consumed by HD were out on the table like a deck of playing cards... I felt like this was where I belonged.

The first day of the full on convention was full of workshops, lunches, quick trips to the Mall of America, where we would inevitably bump in to more people from the convention who were trying to get their souvenir shopping in as well, seemed like we were all neighbors from the same street, like we had all grown up together for years. No one felt that odd feeling like being the one person left out, we were family. The workshops were full of questions and answers. With people just like myself wondering the same things... I didn't feel alone. Having discussions and breaking the ice with a hysterical joke in my fashion. It was like a whole other world in MN. The first night was spent at Feed My Starving Children, where we NYA members packaged food for children in Africa. Our 45 minutes came and went as we danced around and sang to Micheal Jackson toons. At the end of our packaging and cleaning, we discovered the NYA had packaged enough food for 23 starving African children in Kenya for a year!! Talk about life changing!

The second day was also full of meetings, starting with the research that the HD scientists have been doing. Promising hope for us all that we are much closer. Something we have heard a lot, but it has given me some sense of encouragement. I also took part in some at-risk forums that were run by people who were in fact at-risk, tested negative, or had tested positive. Their advice, plan as though you have it, live as though you don't. I also heard from a speaker on how to deal in relationships, and how spouses deal with being with someone who is at-risk for HD. That seemed especially difficult to hear though, because spouses seem to have a bigger impact on someones choice to get tested than the individual themselves. As well as the decision by the person who is at-risk, because we aren't only finding someone who we will be with forever, but who could also be the person that will be our caregivers.

The Gala, being my first, seemed very pleasant. The food was alright, the dessert was delicious, and there was free drinks :], need I say more? The awards went where they needed to, to the people have done so much for HDSA this year. The candle lighting ceremony was heartfelt and inspiring. I know I had a fantastic time on the dance floor learning the polka, and teaching people the electric slide! We partied down until we could no longer stand. It was a wonderful evening with amazing people.

Well, for the most part this was my experience at the HDSA Convention, and long story short, can you say VEGAS!?