There was a period when the last thing I wanted to do with my summer was spend time with other people who have SMA. As a moody, cynical teenager, I really couldn’t care less about engaging with any kind of disability community. I wanted nothing more than to be normal, and that meant distancing myself from people who had the same condition as me.
Things have certainly changed for me since then. I now love interacting with other SMA folks, and I just got back from the annual Cure SMA Conference. This year it took place at Disney World, and I can honestly say it’s one of the best conferences I’ve been to. With over 2,000 attendees, 450 researchers, and dozens of panels all weekend, it was a lot to digest for someone who went to one of the earliest SMA conferences back in 1997.
The first thing that struck both me and my family was the sheer number of people who came this year. Obviously, Disney is an easy way to attract families, but drawing 2,000 people was pretty amazing, as the earliest conferences attracted about 300 attendees. At Thursday night’s meet and greet, my parents and I took almost 10 minutes to find some family friends who made it out this year, as there were so many other families gathered in the ballroom. That night we spent time catching up with these friends and meeting other families, many of whom were new to the SMA community and had kids who had been recently diagnosed. This essentially placed my parents and me among the grizzled veterans who had been coping with SMA for more than two decades.
Nevertheless, it was actually a privilege to be in that category of adults who had already been through the trials and tribulations associated with SMA. As someone with a lot of experience, I was able to advise younger parents and answer questions about how SMA affects a person’s social, academic, and mental development. I was even on a panel on Sunday in which I and five other adults with SMA answered questions about what life and growing up are like with this disease. The audience had so many questions that the moderator had to cut it off at two hours.
The SMA conference used to be mostly composed of research panels, and with everything that’s gone on with the Spinraza treatment in recent months, there was more than enough medical information to discuss this year. However, the beauty of the conference is that it’s not just about updates on working toward an SMA cure, but also about how we can encourage each other to live our lives despite the obstacles we face every day. In addition to the panel on Sunday, I also went to a roundtable only for adults with SMA. We were able to share experiences with each other, ask questions about anything from independent living to dating, and simply be comforted in the presence of others who deal with the same kind of challenges daily.