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...My parents never hid anything from me. I knew exactly what SMA meant. I knew the realities of my future even as a young child. I even remember hearing the...

...So many of my friends who are disabled have spoken about the magic of being in a room full of people who are just like you. Having SMA, and working...

...Previously I wrote about preparing for surgery and the considerations surrounding anesthesia and intubation. But when you have SMA there’s unfortunately so much more to think about and pack when...

...Editorial Note: Nominations for 2024 are now closed. We are very excited to announce the launch of the 2024 Social Health Awards program! The Social Health Awards is an awards...

...Making friends was never difficult for me as a young girl or even as a teenager. I have always been a pretty outgoing person. I was always extremely sociable, loved...

...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...