Questions & Answers

Growing up, at what age did you understand or had been told you have not something wrong with you but that you have special muscles unlike the other kids? (Thats what we call connors condition, to help his older 8 yr old brother understand) connor is type 1 and is currently 7 months old. Recvd zolgemsa on halloween. Didnt finish our last loading dose of spinraza. If you currently do maintaince dosing of spinraza has it been successful for you? Pro? Cons? Effectiveness still? At what age did you… read more

So...part of me knows this is a ridiculous question, but I am hoping that maybe there have been changes I am unaware of. It is that dreaded time when I have to begin to apply for a new wheelchair.

It use to be I would look forward to the process. Use to be every new model of wheelchair would be better, drive further, be faster, overall better. That has not been the case however the last twenty years. The wheelchair I own twenty years ago was in every way better than the one ten years ago… read more

So, this is a bit of a funny question, but I noticed on an SMA news forum a common complaint was the fact that many individuals with SMA said they looked much younger than their age and presumably treated like a child despite being an adult. I felt like this most of my life and only now that I am...well...old...have I only begun to view this as a positive and not a negative. Frankly, I never really connected my SMA with looking younger but now am wondering how common is this? Is it more a… read more

Cause I use a special communication device called a Dynavox & when I don't have my Dynavox I communicate through eye signals or little vocal murmurs. My Dynavox is almost like an IPAD & I access it by tapping a little switch & it scans through buttons until I select the button that I want.Here's a photo of me with my Dynavox 👇👇👇

So, I am very confused as to whether I should get a 6th covid booster just approved by the FDA for individuals over 65 and immunocompromised. Is nothing on the CDC website about SMA, I am not entirely sure my regular doctor fully understands SMA, and the place I get my shots from seem confused and are hesitant to give shot without some confirmation. Am about to go on vacation and I really don't want to have to wear a mask at the beach. I have SMA type 2. Do I qualify for the latest booster?

i.e Spinraza, Evrysdi, Zolgensma

Hi everyone. I have an urgent but somewhat embarrassing question to ask everyone For quite some time I have been desperately looking for attendant care. Currently my night attendant who has another client has been filling in for some time. My agency thinks they may have possibly found someone, but they are only willing to lift me with a hoyer lift. I have a hoyer lift, and while i have successfully used it to transfer from my wheelchair into bed, no one I have ever had out has figured out… read more