Adapting MakeupMakeup 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 SMAOne 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 SupportBack 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
Trying to Experience an Inaccessible WorldI 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 StepsMy 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 TipsThe 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
My Accessible Home AdventureOn 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 30As 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 & ConditionsOfficial 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 AccessibleEverybody 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 ResearchFor 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 WorkIf 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 MediaThis 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
My Spinraza ExperienceI just want to remind everyone that their medical journey will be different from everyone else’s. I share this story in hopes to answer questions you may have and to...reactionscomments
Goodbye 2021, Hello 2022New year’s resolution: avoiding hospital stays. Preferably try to stay healthy and happy as much as I can. Because looking back at the previous year gave me all the hospital...reactionscomments
My Son's Own Apartment When we moved into our new home in 1988 we had an apartment included for Grandma. In 2000 she decided to move into a senior community. At this time and after...reactionscomments
Succeeding as a Disabled College StudentWhen it came time to start looking at colleges, there were two major items on my list that had to be checked: a wheelchair-accessible campus and an amazing football team...reactionscomments
Near Death Experience!Let me tell you the story of the time I almost died...twice. As a person with a spinal fusion and severe scoliosis because of my spinal muscular atrophy type 2...reactionscomments