Over the weekend I was lucky enough to attend the HDSA National Convention for Huntington's Disease in Louisville. It was too expensive for us to pay for at the moment. But my genetic counselor nominated us for a scholarship for first time attendees. A very generous gentlemen paid for our hotel room and admission to the convention. We were also given money for gas to get there and food. It was very kind!
Unfortunately we couldn't make it to the convention until Saturday so we missed what happened on Friday. I was very glad to hear what the speakers had to say on Saturday though. I wouldn't say it was necessarily new information, but to hear the scientists talking about what is to come and the progress that is being made was great. They are working on some promising things that I'm so grateful I have time to wait on. It sounded very hopeful for me. Every bit of progress they make for Huntington's disease makes me feel that much better that at least by the time I am experiencing symptoms, maybe there will be a treatment on the horizon, or better medications, and maybe better help from our government when it comes to health care. We will see.
The main thing I took away from the convention was that I need to sign up for every study I can. I already wanted to, but they were quite adamant about how we can help research so much by participating. It will be good to contribute to the cause. I wasn't able to sign up for a study this weekend, but I will be on the look out from here on out. We are already planning to attend next year's convention. It is in Dallas.
Being surrounded by all of those other people who have HD was nice. It is good to know you are not alone. We broke into workshops that were dedicated to specific topics. I sat in on 'Coping with a Positive Result' and 'Family Planning'. I enjoyed hearing from the speakers and more importantly the other people in the room. It wasn't that informative though. I must know too much! haha
Overall, it was a very good experience and I am glad I was able to go. It is a great way to stay connected and informed and be surrounded by people in similar situations.
