SMA Chat Discord server and other communities

Spinal muscular atrophy is pretty rare. There aren’t many of us out there relative to other conditions. I always enjoy connecting with people that have SMA, so I thought it would be nice to list out a few of the communities that are available.

I imagine that the biggest one is the Living with MD group on Facebook. I’m no longer in this group because I deleted my Facebook account in 2017. Last I was in there it was invite only. But I know there were a ton of people with SMA there. This group is probably the only thing I miss from my Facebook days. But even then, it wasn’t an SMA only community.

SMA Chat on Discord

I’m a moderator on the SMA Chat server on Discord. The server is open to people with SMA as well as parents of children with SMA. We have channels for topical stuff like health and wellness, jobs and careers, assistive tech, dating and relationships, etc.

At one point, we hosted a video meetup, just for getting to know each other. This is something I would like to do again in the future. I enjoy hanging out with people with SMA.

I’m one of the handful of olds on the server, but a cool thing I see happen often is young adults with SMA coming to the server, sometimes in desperation to vent or get advice about struggles that are going on in their lives, only to find that there are people with SMA around their age going through similar things. It creates a bond between people that is different from the ones we form with non-disabled people (not better, just different).

So if you have SMA and you just need to talk to people who get you, the SMA Chat server is a great place.

It’s a quiet server (which is good in some ways) but would love to see many more people there, which is the motivation behind this post.

r/spinalmuscularatrophy on Reddit

Okay, SMA Chat is technically the Discord server for the SMA subreddit. I much prefer Discord to Reddit so I don’t participate much in this community. If you are interested, you should definitely check it out. If you have SMA, just join the Discord server already. :-)

SMA News Today forums

If you aren’t familiar with it, SMA News Today is a site that publishes a ton of articles about SMA. My favorite thing about it is that there are multiple columnists with SMA. Check them out!

They also have forums. This is another good place to meet others with SMA. There are a lot of topical discussions, especially around living with SMA as an adult. It’s not super active, but there is regular ongoing talk.

SpinalMuscularAtrophy.net

I just found this community a few days after originally publishing this article. Similar to SMA News Today, SpinalMuscularAtrophy.net has articles about SMA with many of them written by people who have SMA. They also have forums, which I just joined.

I wish there were more

These are the ones that I know of. If you know any that I didn’t mention please send them my way.