Articles

You’ve heard the saying “the fear of the unknown.” I would not consider myself a fearFULL or pessimistic person however when COVID became the reality of the world, I had...

Recently I just got over my second respiratory infection in two months. Thankfully I hadn’t been sick or needed an antibiotic in over two years. Every time I get sick...

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...

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...

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...

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...

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...

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...

The Rare 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...

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...

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...

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...

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...

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...

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...

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...

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...

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...

I 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...

New 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...