My COVID Experience...You’ve heard the saying “the fear of the unknown.” I would not consider myself a fearFULL or pessimistic person however when COVID...reactionscomments
Stop Surviving and Start Living...Recently I just got over my second respiratory infection in two months. Thankfully I hadn’t been sick or needed an antibiotic in...reactions2comments
Finding the Correct Treatment Journey...When we are given a health issue, we face a new journey. When it’s our own personal journey, we do our best...reactions1comment
Switching from Spinraza to Risdiplam...Hi, Apologies if this has been discussed.. new to forum. I have 2 children with SMA 3, age 13 and 11. They...reactions4replies
Adapting Makeup...Makeup for me has always been something I give myself as a gift of self-care. I enjoy doing my makeup every day and...reactionscomments
SMA and Snow Days ...I don’t think I am alone when I say that winter is just not our favorite season. I tend to run cold...reactionscomments
Managing Fear in SMA...One of the topics I see covered a lot by parents of young people with SMA is the fear that they are experiencing...reactions3comments
Adaptive Equipment for Jessie: Providing Medical, Educational, and Social Support...Back in the 1970s, we found out that our daughter, Jessie, had spinal muscular atrophy [SMA]. A respected doctor told us that...reactionscomments
Help us understand the impact of SMA [Update: Survey now closed!]...About 1 in 6,000 to 10,000 babies worldwide are born with SMA. To better understand the patient experience and realities of spinal...reactionsreplies
Trying to Experience an Inaccessible World...I have so many stories to tell regarding this topic. I have talked about how lucky I consider myself in previous articles...reactions3comments
Rare In America: What's That?...The "In America survey" is now closed. A diagnosis of spinal muscular atrophy (SMA) can be isolating, bringing many questions to the...reactionscomments
Navigating My Treatment Journey as an Adult with SMA – 5 Steps...My journey to getting treatment was not a conventional one. I had not been seen for my SMA in over 13 years...reactions1comment
My Top Travel Tips...The holidays are upon us. If you’re like me, and you are going to be traveling to other people’s homes for the...reactions1comment
Traveling with spinal muscular atrophy...Have you traveled before with SMA? What has your experience been like? Do you have tips for someone who is curious to...reactionsrepliesTravel
My Accessible Home Adventure...On Valentine’s Day in 2019, my life was pushed into a tailspin. I was a full-time college student and I was renting a...reactions1comment
Turning 30...As his parents, we have walked with him through childhood, adolescence, young adult, and now moving into the next decade with all...reactions1comment
SMA Awareness Month Giveaway Terms & Conditions...Official Rules, Terms and Conditions for the SMA Awareness Month 2022 Giveaway NO PURCHASE NECESSARY TO ENTER OR WIN. A PURCHASE DOES...reactionscomments
Let’s Make Flying More Accessible...Everybody deserves to get away and chill by the pool or visit their dream destination. But traveling with a disability can be...reactions3comments
The Power of Research...For those of us living with SMA, these are exciting times when it comes to research and FDA-approved treatments. I’ve always been...reactionscomments
