In America: What's That?A diagnosis of spinal muscular atrophy (SMA) can be isolating, bringing many questions to the forefront. To learn more about the challenges of living with SMA, we are conducting our... By Editorial Team 2 min readBookmark for laterReactions 0 reactions Comments0 comments
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... By Samantha Przybylski4 min readBookmark for laterReactions 0 reactions Comments0 comments
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... By Megan DeJarnett2 min readBookmark for laterReactions 0 reactions Comments1 comments
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... By Allie Williams5 min readBookmark for laterReactions 0 reactions Comments1 comments
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... By Maryalice Noon2 min readBookmark for laterReactions 0 reactions Comments1 comments
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... By Editorial Team 10 min readBookmark for laterReactions 0 reactions Comments0 comments
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... By Chaz Hayden2 min readBookmark for laterReactions 0 reactions Comments3 comments
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... By Mike Noon2 min readBookmark for laterReactions 0 reactions Comments0 comments
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... By Megan DeJarnett2 min readBookmark for laterReactions 0 reactions Comments0 comments
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... By Mike Noon2 min readBookmark for laterReactions 0 reactions Comments4 comments
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... By Megan DeJarnett2 min readBookmark for laterReactions 0 reactions Comments0 comments
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... By Ainaa Farhanah2 min readBookmark for laterReactions 0 reactions Comments0 comments
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... By Maryalice Noon2 min readBookmark for laterReactions 0 reactions Comments0 comments
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... By Chaz Hayden2 min readBookmark for laterReactions 0 reactions Comments0 comments
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... By Allie Williams4 min readBookmark for laterReactions 0 reactions Comments0 comments
Insurance DenialsI always hoped and wished for a day that we would see incredible achievements in the medical world for the SMA community. I never knew if I would be alive... By Megan DeJarnett2 min readBookmark for laterReactions 0 reactions Comments2 comments
Uncovering State ProgramsI have mentioned before that I was pretty lucky in the sense that I didn’t require much assistance for a good portion of my life. I never gave much thought... By Mike Noon3 min readBookmark for laterReactions 0 reactions Comments0 comments
Smart IndependenceAs an independent disabled adult, one of my fears is that I will be alone with a caregiver and the caregiver will have an emergency and I will be unable... By Allie Williams3 min readBookmark for laterReactions 0 reactions Comments2 comments
An Open Letter to Newly Diagnosed ParentsIf you are reading this, you have probably been recently told that your lovely child has spinal muscular atrophy (SMA). You probably have had to sit through various appointments with... By Lewis Beatty2 min readBookmark for laterReactions 0 reactions Comments1 comments
A Young Man’s Social YearsEvery parent can relate to those years of watching your adult child living those carefree years after college, beginning their working careers. So now they have the income to enjoy... By Maryalice Noon2 min readBookmark for laterReactions 0 reactions Comments0 comments