Articles

My daughter, who had spinal muscular atrophy, was mainstreamed in a regular classroom throughout her school years. We lived in a semi-affluent area. All her classmates were able-bodied. Her fellow...

Recently I shared how my journey with Evrysdi stopped after taking the medication for over a year. This was for a few reasons, the primary being insurance battles and their...

I have been house shopping. There is a better chance of winning the lottery than finding the perfect home that is 100% accessible to meet my needs. The trick is...

It can be challenging as a parent to tackle difficult conversations with children and young adults about spinal muscular atrophy or disabilities. We reached out to our team of advocates...

I wanted to give some insight about being receptive to the charity of well-meaning people. My coworkers were always supportive in listening to all my fears and concerns, in particular...

I was raised by two amazing parents who truly fought for the best for their children, both disabled and not. Like I think most parents do, my parents did everything...

Content Note:This article describes the author's personal experience with pregnancy loss. I was 2 weeks late... I was never late. My heart soared... I was elated when I took the...

Not everything that happens in Vegas stays in Vegas, especially when it comes to sharing stories. Like how I got upgraded to a suite, free admission to the casino pool...

Living within the dash, 1974-1991. My wife and I lived 'within the dash,' holding a ticking time bomb. During this time my daughter lived her life battling spinal muscular atrophy...

A few weeks ago Suzanne and I went out to dinner with friends of ours to a new restaurant. We arrived first and were seated. While looking over the menu...

My friends call me "Mary Poppins" because my backpack is full and has everything you could ever need in it. Like many other wheelchair users with spinal muscular atrophy, backpacks...

As a parent, we can remember that day when we heard the news, "Congratulations, you are going to have a baby." From that moment on, we immersed ourselves in planning...

I had SMA type 2 and became a mother at the age of 25. I then became a mother for a second time only 20 months later. Parenting can be...

It can be difficult to find a provider who checks all the right boxes. A good relationship and someone who you can trust is really important to feel in control...

When SMA treatments first became available, I honestly wasn’t sure how I felt. At the time it was just Spinraza which I never tried due to other medical issues and...

When living with a disability like spinal muscular atrophy, we heavily rely on equipment that gives us our independence. This freedom is wonderful until it breaks. I don’t know about...

I think we all can remember watching the MDA Telethon over the years. In addition to raising funds for research, a week at a summer camp for kids with a...

I am coming up on my 12th year of using a personal care assistant (PCA), who isn't a personal relative. There are pros and cons to using a PCA in...

Living with spinal muscular atrophy takes a lot of preparation and planning ahead. We reached out to our team of advocates here at SpinalMuscularAtrophy.net to find out what they always...

I’m in my mid 40’s and I find it encouraging that mental health has become more out in the open. I know living with spinal muscular atrophy has probably made...