Living

Our daughter was diagnosed with spinal muscular atrophy (SMA) at six months old. The doctor told my wife and me that our daughter would need early intervention training, including therapy...

We asked our team of advocates: What challenges have you faced around SMA treatment options?Allie: Due to how the approval of the medication process goes with the trials, which often...

My worst nightmare is the thought of any of my equipment breaking at a time when I need it the most. Whether it be my wheelchair, BiPAP, cough assist machine...

The Media Habits Survey is now closed. Thank you for your interest! Managing a chronic condition is not easy and can be physically and mentally exhausting. What types of media...

I don’t think there’s anyone that actually enjoys going to the dentist. Now, mix in the fact that this could be quite a unique situation or a difficult one if...

Traveling when you have SMA can be a daunting undertaking. Many individuals who have SMA have never flown on an airplane. Air travel remains quite inaccessible even in 2022. As...

Let’s talk about saving money while being on government assistance in the United States. I am on social security disability which is different from supplemental security income but still riddled...

Previously I wrote about getting my wisdom teeth removed and the pre and post-surgery to make sure everything was successful considering my respiratory issues. But the process to fix my...

I wrote an article talking about the benefits I have been experiencing from stretching. I also had a long run at receiving massage therapy. Again I’m not a doctor so...

I’m approaching my 33rd year of life, and as I reflect on my younger years, I remember thinking I had it all figured out when I was in my teens...

In the 1980s, my daughter who had spinal muscular atrophy (SMA) was growing bigger and taller. We noticed that she was having difficulty sitting upright by herself in her wheelchair...

I have talked about Mike’s good friends who were always including him with all their adventures.  Well, the best friend of all in his younger years was his brother Dan...

I know many things have advanced in the medical field especially when it comes to spinal fusions. I had mine done at the age of 11 and I know many...

Over the course of the last 5 years, I have had the opportunity to fly around the country. It had been some time since I had flown. I was going...

Something that’s rarely talked about in the SMA community is the process of transition from pediatric to adult care. It’s hard enough to find a good team of doctors who...

Deciding to become pregnant as a female with SMA can be a very big decision. In my case, I knew I had always wanted to be a mom but I...

Around the time I got my g-tube, I also realized that I was having problems with my jaw and teeth. After I had braces as a teenager, I never had...

Social media has opened up a wealth of connections and information to people all over the world and is an important access tool for people with disabilities who may be...

Why we make great leaders, parents, and executives: If you were born in the last 40 years, there’s a good chance that you have taken some form of personality or...

The last day of February is Rare Disease Day! To celebrate and acknowledge this important day in the rare disease community, we asked our advocates: What does Rare Disease Day...