The 2024 Social Health Awards ProgramEditorial Note: Nominations for 2024 are now closed. We are very excited to announce the launch of the 2024 Social Health Awards...reactionscomments
Making Forever FriendsMaking 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 DaughterMy 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 EvrysdiRecently 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 SMAIt can be challenging as a parent to tackle difficult conversations with children and young adults about spinal muscular atrophy or disabilities...reactionscomments
The FundraiserI 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 SMAI 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 BeContent 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 VegasNot 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 BombLiving 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 GreetingA 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 TripsMy friends call me "Mary Poppins" because my backpack is full and has everything you could ever need in it. Like many...reactionscomments
A Parent's JourneyAs a parent, we can remember that day when we heard the news, "Congratulations, you are going to have a baby." From...reactions1comment
The Odd Mom OutI had SMA type 2 and became a mother at the age of 25. I then became a mother for a second...reactionscomments
Tips for Finding Healthcare ProvidersIt can be difficult to find a provider who checks all the right boxes. A good relationship and someone who you can...reactions1comment
I Stopped Taking EvrysdiWhen SMA treatments first became available, I honestly wasn’t sure how I felt. At the time it was just Spinraza which I...reactionscomments
The Frustrations of Broken EquipmentWhen living with a disability like spinal muscular atrophy, we heavily rely on equipment that gives us our independence. This freedom is...reactions2comments
The Joy of the MDA Summer CampI think we all can remember watching the MDA Telethon over the years. In addition to raising funds for research, a week...reactionscomments
Day in the Life Without Your PCAI am coming up on my 12th year of using a personal care assistant (PCA), who isn't a personal relative. There are...reactionscomments
