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
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
Navigating Early Intervention and EducationOur daughter was diagnosed with spinal muscular atrophy (SMA) at six months old. The doctor told my wife and me that our...reactionscomments
A Trip to The Dentist with SMAI don’t think there’s anyone that actually enjoys going to the dentist. Now, mix in the fact that this could be quite...reactionscomments
Sibling LoveI have talked about Mike’s good friends who were always including him with all their adventures. Well, the best friend of all...reactionscomments
A Difficult Decision About Scoliosis Surgery For Our DaughterIn the 1980s, my daughter who had spinal muscular atrophy (SMA) was growing bigger and taller. We noticed that she was having...reactionscomments
What I Would Tell My Teenage SelfI’m approaching my 33rd year of life, and as I reflect on my younger years, I remember thinking I had it all...reactionscomments
The Administrative Bent of People with SMAWhy we make great leaders, parents, and executives: If you were born in the last 40 years, there’s a good chance that...reactionscomments
The Misery of Accessible House HuntingSearching for a dream home or apartment is a daunting task and even more so for a person with a disability. There...reactions1comment
Bullying on Social MediaSocial media has opened up a wealth of connections and information to people all over the world and is an important access...reactionscomments
My COVID ExperienceYou’ve heard the saying “the fear of the unknown.” I would not consider myself a fearFULL or pessimistic person however when COVID...reactionscomments
The Expense of Maintaining a Power ChairI know I have mentioned this before but it’s worth repeating. Having a disability is expensive. It’s one of the aspects of...reactions1comment
Coming Up With A Treatment PlanRecently this topic was suggested to me and to be honest, I have sat with my feelings on this for quite some...reactions2comments
SMA and Snow Days I don’t think I am alone when I say that winter is just not our favorite season. I tend to run cold...reactionscomments
Adaptive Equipment for Jessie: Providing Medical, Educational, and Social SupportBack in the 1970s, we found out that our daughter, Jessie, had spinal muscular atrophy [SMA]. A respected doctor told us that...reactionscomments
Finding the Right Healthcare TeamThere are many different providers who treat spinal muscular atrophy, but certain factors like location, insurance, access, and cost can present challenges...reactionscomments
