Activity

Forums Director Kevin Schaefer talks about how video games can benefit rare disease patients in hospitals right now, including those with neuromuscular conditions like SMA.

SMA News Today’s multimedia associate, Price Wooldridge, discusses SMA treatment and screening programs “essential” in the Covid-19 pande…[Read more]

I had to share the good news with y’all! I heard the other day that my insurance has started covering JACO arms, so I’m getting one (assuming all goes as planned)! I’m so excited. My rep is flying out from Washington in June for the initial evaluation.

I know some of our members have JACO arms. Any tips for getting started? 

Has anyone here begun to resume normal activity amid the lingering pandemic? My state is entering phase II of reopening on Monday, and more businesses are included in this phase. Our number of positive cases has dropped significantly, too.

That being said, I fear a relapse could happen with more people getting out and about. I plan on waiting…[Read more]

Now that the weather is finally straightening out I want to spend more time outside.  I’m looking for ideas on what to do.  I used to do a lot with my service dog, but without him I’m finding it a little boring.  I’m going to try my hand at flying a drone, but open to other suggestions as well.

Hey everyone! Hope you’re all having a great week so far.

Check out my latest column here. I wrote about my thoughts regarding risdiplam, and whether or not I would switch treatments. Personally, I’m not in any rush, but I’m excited for the number of options we’ll soon have. My plan is to wait and see how other adults who are on Spinraz…[Read more]

Today, I am drained. And I can’t say it’s because I’ve done too much physically since my life has slowed down significantly in quarantine.

I struggle with fatigue on a daily basis as I’m sure many of us do. But some days hit harder than others with no rhyme or reason. There doesn’t seem to be any pattern as to why some days I’m good and ot…[Read more]

Forums Director Kevin Schaefer talks about the investigational therapy risdiplam, and whether or not he would consider switching treatments.

Masks are a hot topic on the forums. With finding it difficult to breathe through them and some experiencing negative effects from wearing them, forum members are seeking alternatives. Other topics…[Read more]

Mother’s Day month is quickly coming to a close. Okay, I know Mother’s day isn’t a month-long celebration, but maybe it should be. 

Recently I had the opportunity to interview Jennifer Perkins about being a mother with SMA and having a family. Family is a topic that often comes up here on the forums. Since…[Read more]