Search

...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...

...I know I have mentioned this before but it’s worth repeating. Having a disability is expensive. It’s one of the aspects of the disability that is probably not thought about...

...Searching for a dream home or apartment is a daunting task and even more so for a person with a disability. There aren’t any laws that mandate accessible requirements within...

...Recently this topic was suggested to me and to be honest, I have sat with my feelings on this for quite some time. If you are reading this as a...

...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...