Cure SMA Conference Tips

I went to the Cure SMA Conference for the first time when I was 10 with my mom, dad, and grandparents (my mom's parents). To be honest, I was in denial of my spinal muscular atrophy. I genuinely don't know why, but I hated everything about my disease, especially everyone celebrating and being proud of it.

Accepting my SMA and loving the SMA community

I don't know when I came to terms with my SMA was. Do I love having it? Not every day no, but I love my community and talking to them and advocating.

I went to the conference for the first time as an adult in 2019 and it genuinely changed my life. The things that they talked about, the people I met, and the things mom and I did in Disneyland were so much fun!

It was our first time ever in California and Disneyland and it was such a dream. Some of the panels that I remember were my favorite: "How to find caregivers," "Becoming financially independent," and "Adults talk it out!" I actually made a bunch of friends at the "adults talk it" out panel!

One of the caregivers recommended a book that's now my favorite: The Subtle Art of Not Giving a F**k by Mark Manson! I haven't had a chance to finish it, but it's genuinely helped my mental health and confidence so much!

Plan to go to the conference the first day

As far as tips go, definitely go the first day to register and officially sign in so you can get their little swag bag and your panel badge so you can go to the different panels and people can see who you are and where you're from.

If you're a very shy person like me, I would definitely go to the "adults talk it out" panel. You can talk about anything and everything. Someone asked about what shows we were watching, and another asked about our treatment journey. (For me, my favorite shows currently are Schitt’s Creek (Hulu), The Mindy Project (Netflix), and Steven Universe (Hulu).)

At the time of the conference, I wasn't on Evrysdi yet, and everyone there was on Spinranza. I had tried Spinranza, but because of my metal rods, they couldn't take me. I'm very grateful that Spinranza didn't work out. The procedure is very complicated and scary to me, so much can happen. I've been on Evrysdi since 2020, and it's helped me a lot, but that's a post for another time.

Everyone at the conference understands

Community at the conference is truly everything. I'm a very shy person, but they have a lot of great adults hangouts as well as the talk it outs, which are very fun. If you're shy like me, just try saying hi! Everyone is mostly going through the same thing as you so they get it! They're all very kind and supportive, so don't worry that you won't be included.

Finally, I recommend going to as many panels, booths, and things outside the conference as well! I had so much fun at the conference, but also outside of it doing Disney things and California tourist things!

I'll be going again this year

This year's conference is from June 29th - July 2nd! You also might see me at an event on that Thursday! I can't wait to see my friends again and celebrate our SMA!