Alyssa Silva

hey Ryan. unfortunately, I don’t have any suggestions, but I struggle with this too—especially in the winter months when I’m not doing much of anything. When I’m in a total writers’ block, I do some research. I read these forums, scope out SMA groups on social media and look for what people are asking. where can I add value and experienc…[Read more]

What Ryan said haha.

I’ve been to two. First one was an overnight bachelorette party in a beach town for my cousin, and my mom came with me. The second one I planned. I was the best man in my brother’s wedding, and we did a big BBQ then rented a party bus for the night. The bus wasn’t accessible, but my friend who was also in the wedding party took care of me whi…[Read more]

Hi Jessica. If you have a pulse oximeter, first check her oxygen. If it is below her norm and she isn’t acting herself, I strongly suggest seeking medical attention immediately. As Kevin said, it never hurts to be on the safe side. Best wishes to you and your little one.

Best of luck on your Spinraza journey, Mike! Sending you well wishes.

So often I encounter experiences like this. Just the other day, I drove by a church whose ramp began at the edge of a sidewalk curb. Having a ramp to avoid stairs and inaccessibility kind defeats the purpose when there’s a step to get onto the ramp. Guess I won’t be going there anytime soon!