Eating Out...As I’ve gotten older and my disease, spinal muscular atrophy, has progressed a little more, eating out started to become more of...reactionscomments
Accessible Summer Activities for Kids with SMA...Summertime is an interesting part of the year for people with disabilities, especially children. Warm weather seems great, but really it leads...reactionscomments
Fear of Death Because of SMA...My parents never hid anything from me. I knew exactly what SMA meant. I knew the realities of my future even as...reactions2comments
Accessible Summer Fun...Share your tips for accessible summer activities for kids OR adults. What do you do to enjoy the 'good old summertime?'...reactionsrepliesExercise & Activity
Finding Disabled Joy...So many of my friends who are disabled have spoken about the magic of being in a room full of people who...reactionscomments
What to Bring to the Hospital...Previously I wrote about preparing for surgery and the considerations surrounding anesthesia and intubation. But when you have SMA there’s unfortunately so...reactionscomments
The 2024 Social Health Awards Program...Editorial Note: Nominations for 2024 are now closed. We are very excited to announce the launch of the 2024 Social Health Awards...reactionscomments
Making Forever Friends...Making friends was never difficult for me as a young girl or even as a teenager. I have always been a pretty...reactions4comments
How Clothes Made the Difference to My Daughter...My daughter, who had spinal muscular atrophy, was mainstreamed in a regular classroom throughout her school years. We lived in a semi-affluent...reactions2comments
Side Effects from Stopping Evrysdi...Recently I shared how my journey with Evrysdi stopped after taking the medication for over a year. This was for a few...reactions1comment
What Is an Accessible Home? ...I have been house shopping. There is a better chance of winning the lottery than finding the perfect home that is 100%...reactionscomments
For Parents: Advice on Talking to Young Children About SMA...It can be challenging as a parent to tackle difficult conversations with children and young adults about spinal muscular atrophy or disabilities...reactionscomments
Recently Diagnosed Discussion Board...Recently diagnosed? Questions about treatment? Accessibility? Ask your questions here and our patient leaders will respond with their experiences....reactionsrepliesNewly Diagnosed
The Fundraiser...I wanted to give some insight about being receptive to the charity of well-meaning people. My coworkers were always supportive in listening...reactionscomments
Transitioning To Adulthood with SMA...I was raised by two amazing parents who truly fought for the best for their children, both disabled and not. Like I...reactionscomments
The Pregnancy That Couldn't Be...Content Note:This article describes the author's personal experience with pregnancy loss. I was 2 weeks late... I was never late. My heart...reactions1comment
That One Time in Vegas...Not everything that happens in Vegas stays in Vegas, especially when it comes to sharing stories. Like how I got upgraded to...reactions1comment
Parents Living With a Ticking Time Bomb...Living within the dash, 1974-1991. My wife and I lived 'within the dash,' holding a ticking time bomb. During this time my...reactionscomments
The Awkward Greeting...A few weeks ago Suzanne and I went out to dinner with friends of ours to a new restaurant. We arrived first...reactionscomments
Tips and Tricks for Day Trips...My friends call me "Mary Poppins" because my backpack is full and has everything you could ever need in it. Like many...reactionscomments
