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
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
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
Dealing with Changes in SMASpinal 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 SMALiving 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 WheelchairOur 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 ObstaclesGrowing 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 PeopleHaving 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 SpecialistWhen it comes to finding a specialist for spinal muscular atrophy, there are many different factors that come into play. Is the...reactionscomments
Accessible Bathrooms: Expressing my ConcernsLet’s talk about wheelchair-accessible bathrooms and stalls. I just had an “incident” recently at my local YMCA. I have been a member...reactionscomments
Playing the Evrysdi Long GameGrowing up, it always seemed like there was never going to be a treatment for SMA aside from the normal physical therapy...reactions1comment
Turning 30As his parents, we have walked with him through childhood, adolescence, young adult, and now moving into the next decade with all...reactions1comment
My Daughter Was Not Meeting Developmental MilestonesThe story begins...My daughter, Jessica was born with spinal muscular atrophy [SMA]. She was a twin and my son did not have SMA. So...reactionscomments
How to Make Working At Home WorkIf we have learned anything through the pandemic, it's that most jobs can be done at home. The world has adjusted to...reactionscomments
My Son's Own Apartment When we moved into our new home in 1988 we had an apartment included for Grandma. In 2000 she decided to move...reactionscomments
Insurance DenialsI always hoped and wished for a day that we would see incredible achievements in the medical world for the SMA community...reactions2comments
An Open Letter to Newly Diagnosed ParentsIf you are reading this, you have probably been recently told that your lovely child has spinal muscular atrophy (SMA). You probably...reactions1comment
