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...
Day in the Life Without Your PCA...I am coming up on my 12th year of using a personal care assistant (PCA), who isn't a personal relative. There are...reactionscomments
Dealing with Changes in SMA...Spinal muscular atrophy has a host of challenges we all deal with at some stage. While all of our journeys with SMA...reactionscomments
Essential Items to Manage SMA...Living with spinal muscular atrophy takes a lot of preparation and planning ahead. We reached out to our team of advocates here...reactions1comment
The First Time Pushing My Son in a Wheelchair...Our son was diagnosed with a neuromuscular disease at the age of 5. At that time the name given for his condition...reactionscomments
Take the Health and Media Habits Survey!...The Media Habits Survey is now closed. Thank you for your interest! Managing a chronic condition is not easy and can be...reactionscomments
Early Education Obstacles...Growing up, it seemed like my parents were always fighting with the school district about something. Most of the challenges I faced...reactions1comment
Surround Yourself With the Right People...Having the right people around you in life is so vital. Especially in a world where so much is said online, and...reactionscomments
Qualities of a Good SMA Specialist...When it comes to finding a specialist for spinal muscular atrophy, there are many different factors that come into play. Is the...reactionscomments
