Weight: Freshman 15 to the Covid 19...Today I’m talking about weight. At some point in our lives, most of us deal with weight gain. Back in college, the freshman...reactionscomments
Shopping for Clothes with a Disability...One of the biggest challenges of living with SMA is buying new clothes, especially pants. For me, it’s not possible to go...reactions2comments
Living My Life as a Computer...Hello, everybody! You can call me Smurf because that was given to me from my friends that I have met over the...reactions6comments
Tips for Accessible Housing...We asked our patient leaders: What housing tips do you have for someone with spinal muscular atrophy (SMA)? Have you taken steps...reactionscomments
Ainaa Farhanah...is a very active young artist from Malaysia. Her passion for arts since childhood is depicted in all her designs and paintings...
Raising a Girl...I have lived a life of always confirming my own personal safety. Once I had a child, the awareness grew exponentially. My...reactions2comments
Tough Days...Some mornings you wake up and you just know the day is going to be tough. You want to stay in bed...reactions1comment
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
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
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
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
Contact Us...Have a question? We’re here to help. Please email us at contact@SpinalMuscularAtrophy.net. Please note that our team hours are Monday-Friday 8:30AM -...
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
Feeding Tubes...People with spinal muscular atrophy (SMA) have muscle weakness that can lead to difficulty chewing and swallowing. If it becomes hard to...
Type 3 Kugelberg-Welander...People with type 3 spinal muscular atrophy (SMA) have milder symptoms that progress slowly. They can stand and walk independently at some...
Tips for Finding Healthcare Providers...It 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 Evrysdi...When SMA treatments first became available, I honestly wasn’t sure how I felt. At the time it was just Spinraza which I...reactionscomments
Other Neuromuscular Disorders...Spinal muscular atrophy (SMA) is one of many disorders of muscles and the nerves that control them. These are called neuromuscular disorders...
