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 to get the right answers and treatment. We...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 have been on Spinraza for 2 years. Considering...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 enjoy the feeling I get when looking in...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 (which I know a lot of other people...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. As an adult with SMA, that fear is...reactions1comment
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 we should “put her away” because she was...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 muscular atrophy, we are fielding our first In...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. I was relatively self-dependent up until my early...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 forefront. To learn more about the challenges of...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. After college, I had moved out of state...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 holidays, here are my top tips for being...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 travel / travel more often? If not, why...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 home just outside of the city limits where...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 the years of being brave and fighting that...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 NOT INCREASE YOUR CHANCES OF WINNING. VOID WHERE...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 a scary thought considering what medical equipment needs...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 someone who has tried to consume as much...reactionscomments
How to Make Working At Home Work...If we have learned anything through the pandemic, it's that most jobs can be done at home. The world has adjusted to a “new normal,” and I don’t think we...reactionscomments
Dealing with SMA in the Age of Social Media...This article is more for parents of younger children who have SMA. There are a lot of Facebook groups revolving around SMA. I don’t actively post in these groups, however...reactions4comments