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 SMAOne of the topics I see covered a lot by parents of young people with SMA is the fear that they are experiencing...reactions3comments
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...reactions3comments
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...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...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...reactions1comment
Turning 30As his parents, we have walked with him through childhood, adolescence, young adult, and now moving into the next decade with all...reactions1comment
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...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...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...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...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...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...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...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:...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...reactionscomments
Insurance DenialsI always hoped and wished for a day that we would see incredible achievements in the medical world for the SMA community...reactions2comments
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...reactionscomments
Smart IndependenceAs an independent disabled adult, one of my fears is that I will be alone with a caregiver and the caregiver will...reactions2comments
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...reactions1comment
