• Luke Hoban

Looking Forward to SciFam



My first Cure CMD conference memories actually pre-date Cure CMD and the conferences themselves. In the early 2000s, when I was around ten years old, there was a group of us who would meet every summer in a conference room at Children’s Hospital of Philadelphia. While our parents would listen to Dr. Bonneman and his colleagues discuss their current understanding of CMD, a group of us would goof off in the hallway and cafeteria. As anyone who attended those early conferences knew, those goof-off sessions frequently devolved into games of hockey played in and among the cafeteria tables.


As I got older and Cure CMD became an official organization, I became a little more interested in what exactly was going on behind those big double doors. I sat in on a few sessions and retained very little information. I stuck with the hockey outside instead.


Over the years, I became more and more involved in the conference planning. I went off to high school and college. The conferences grew bigger, then moved to Washington, D.C. A few times, I was even asked to speak on a panel! At the time, this was baffling to me. But it became clear that building a community was arguably the most important part of those annual meetings.


I spoke about my experiences in high school, going off to live alone at college, starting on BiPap and daytime ventilation, and playing power wheelchair hockey. At each event I met more and more community members, young parents and effected individuals.


Obviously, this year that will be more difficult as SciFam moves online. But I’m looking forward to the conference nonetheless. There are going to be lots of great videos in the portal, both live and recorded. I would know—I made one! Liam Miller, Paul Desaulniers and I talked about our experiences with powerhockey and the benefits of playing a competitive sport in a wheelchair. And that’s just one video. I won’t spoil anything else for you, but I’ve had a sneak preview of some of the other content that will be posted in this week and it’ll be well worth tuning in.


Hopefully, next year we’ll have the option to gather in person. I can’t wait to see my Cure CMD family again. But this year, we can embrace the slightly different experience. After all, a virtual event isn’t so geographically limiting. Hopefully there will be some new faces in the crowd this year who may not have been able to attend an in-person event! And while there won’t be any hockey this time around, I’m looking forward to another great conference (and maybe learning just a little bit more than I did when I was ten).

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