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
The Misery of Accessible House Hunting...Searching 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 Media...Social media has opened up a wealth of connections and information to people all over the world and is an important access...reactionscomments
My COVID Experience...You’ve heard the saying “the fear of the unknown.” I would not consider myself a fearFULL or pessimistic person however when COVID...reactionscomments
Home Accessibility...Families of children with spinal muscular atrophy (SMA) often choose to modify their home. These changes can help meet children’s specific needs...
Assistive Equipment: Infants and Children...Infants and children with spinal muscular atrophy (SMA) can have difficulty with daily tasks because of low mobility. However, assistive equipment can...
Treatment Expectations for Adults with SMA...A common misconception is that spinal muscular atrophy (SMA) only affects children. However, adults make up a large portion of people living...
Complications of Spinal Muscular Atrophy: Joint Contractures...People with spinal muscular atrophy (SMA) can develop long-term complications because of progressive muscle weakness. One complication that is especially common in...
Complication Of Spinal Muscular Atrophy: Pain...People with spinal muscular atrophy (SMA) can experience complications due to progressive muscle weakness. This includes joint and breathing problems. Children with...
Careers and ADA...Adults with spinal muscular atrophy (SMA) have the same career goals as other adults. Symptoms of SMA can sometimes get in the...
The Expense of Maintaining a Power Chair...I 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 Plan...Recently this topic was suggested to me and to be honest, I have sat with my feelings on this for quite some...reactions2comments
SMA Clinical Trials...Clinical trials for spinal muscular atrophy (SMA) help doctors understand more about the disease. Information from clinical trials helps develop new treatments...
