Accessible Bathrooms: Expressing my Concerns...Let’s talk about wheelchair-accessible bathrooms and stalls. I just had an “incident” recently at my local YMCA. I have been a member...reactionscomments
Adults and Spinal Muscular Atrophy...Adults with spinal muscular atrophy (SMA) have the same desire to live and work independently as everyone else. Stereotypes about disabilities often...
Playing the Evrysdi Long Game...Growing up, it always seemed like there was never going to be a treatment for SMA aside from the normal physical therapy...reactions1comment
My Child Has SMA...Parents of children with spinal muscular atrophy (SMA) are usually their child’s main caregivers. With support from doctors, parents become the experts...
Complications of Spinal Muscular Atrophy: Malnutrition And Aspiration Pneumonia...Children with spinal muscular atrophy (SMA) often have progressive muscle weakness in the tongue, throat, and jaw. This usually makes it difficult...
Caregiver Corner...Caregiving can be a fulfilling experience that improves your relationship with loved ones. However, it is often a full-time responsibility that affects...
Turning 30...As 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 Milestones...The 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 Work...If 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 Denials...I 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 Parents...If you are reading this, you have probably been recently told that your lovely child has spinal muscular atrophy (SMA). You probably...reactions1comment
Genes and Anatomy of Spinal Muscular Atrophy...Spinal muscular atrophy (SMA) is a genetic disorder that causes progressive (gets worse over time) muscle weakness. It is caused by a...
Samantha Lackey...Samantha was previously an advocate on SpinalMuscularAtrophy.net. Samantha is a first-time mom to Stella, who has spinal muscular atrophy (SMA) type 1...
Navigating Early Intervention and Education...Our 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 SMA...I 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 Love...I 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 Daughter...In 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 Self...I’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 SMA...Why we make great leaders, parents, and executives: If you were born in the last 40 years, there’s a good chance that...reactionscomments
