Sorry To Miss The CureSMA Conference

I really wanted to go to The CureSMA Conference this year! I have no idea why Mike didn’t sign us up. I’m still so mad at him! Why on earth would you pass up a free trip to Disney?! We love Florida, and I have been curious about Disney since I know some adults who go there for their own enjoyment - sans kids.

Worried about the wheelchair on a plane

Mike had a list of hesitations, but come on! It’s Disney. You don’t pass up a free trip to Disney. He got a new motorized wheelchair in April, and we haven’t decided whether we want to take it on a plane if we can avoid it. Seems like so many wheelchairs get damaged in transit. It would be nice if they had a spot on the plane where an electric wheelchair could be locked into place. It’s not easy for a wheelchair user to be out of the chair they are used to. Maybe flying will become more accessible in the future.

However, that’s still no excuse because we LOVE driving down to Florida. We’ve already driven down to Florida twice. Once, we drove all the way to Key West. On our last trip, we discovered St. Augustine, which we highly recommend. Anyway we enjoy road trips, it’s a comfortable way for us to travel. And having the van gives us the freedom and the peace of mind of knowing Mike’s new wheelchair will not be damaged or lost.

Really wish we had attended

So, as you can tell, I was already not taking this whole missing The CureSMA Conference thing very well.  Then I saw Shane and Hannah’s YouTube videos where they talked about their experience and how they enjoyed it thoroughly. During one of our SpinalMuscularAtrophy.net health leader meetings, Allie Wheelz said The CureSMA Conference healed her soul.  Ah! I’m so so jealous. My soul could use some healing.

I won’t let this happen again. From now on we must sign up every year. It’s not like we have much else going on! I really don’t understand why Mike didn’t sign us up. I hear the pools alone are worth the trip. Mike loves to swim it’s how he gets his physical therapy. I would have loved to meet Allie, Shane and Hannah in person. (They are SMA superstars, let’s face it!)

Connecting with others living with SMA

Aside from the obvious luxury of a free trip to Disney, the conference also offer us a unique opportunity to connect with other people whose lives are affected by spinal muscular atrophy.

We wouldn’t have heard of the program we are currently in for example, had it not been for a friend we met at an SMA event. Not to mention the emotional support of meeting other humans with a shared lived experience.

Well, maybe they will do it again in Disney World someday, 3 or 4 years from now. We won’t miss it. I’ll see to that. Next year the conference will be in Austin. We hope to see you all there!

Have you been to the SMA conference? Please leave a comment and let us know how your experience was.