Adaptive Equipment for Jessie: Providing Medical, Educational, and Social Support...Back 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 Team...There are many different providers who treat spinal muscular atrophy, but certain factors like location, insurance, access, and cost can present challenges...reactionscomments
Hope is The Word...Reliving our family stories brings back many memories of my son's journey with SMA. The emotions felt were painful, inspirational, scary, hurtful...reactions3comments
Managing Appointments for SMA...Spinal muscular atrophy (SMA) can impact different parts of your health and daily life. People with SMA must see many types of...reactionscomments
The Power of Research...For those of us living with SMA, these are exciting times when it comes to research and FDA-approved treatments. I’ve always been...reactionscomments
A Young Man’s Social Years...Every parent can relate to those years of watching your adult child living those carefree years after college, beginning their working careers...reactionscomments
New Year, New Care...When the New Year rolls around, everyone reflects on the previous year and sets goals for the new one. For those of...reactionscomments
Uncovering State Programs...I have mentioned before that I was pretty lucky in the sense that I didn’t require much assistance for a good portion...reactionscomments
Goodbye 2021, Hello 2022...New year’s resolution: avoiding hospital stays. Preferably try to stay healthy and happy as much as I can. Because looking back at...reactionscomments
A Letter to My Parents: WE are Living with SMA...Parenting isn’t a job for the faint of heart. I live in a world full of adults living with disabilities, and I...reactions4comments
Thank You for Taking Our Survey!...We appreciate you taking the time to answer all of our questions. Your responses will help us better understand life with spinal...reactionscomments
How My Elf On The Shelf Turned Into Something More...My daughter Stella is two and a half years old. Lately, Stella's development has revolved around exploration. Continuing to push her limits...reactions1comment
Mental Health Impact...Having a chronic condition like spinal muscular atrophy (SMA) can take a toll on mental health. Lack of control and fear of...
Type 4 Adult...Type 4 is on the mild end of the spectrum of spinal muscular atrophy (SMA). People with type 4 SMA usually experience...
Spinal Muscular Atrophy With Progressive Myoclonic Epilepsy (SMA-PME)...Spinal muscular atrophy with progressive epilepsy (SMA-PME) is a very rare type of SMA. SMA-PME is also an inherited neuromuscular disorder. However...
Top Tips for Hiring a PCA...Let’s begin with what a PCA is, and what a PCA is not. A personal care assistant should entail three things: Personal...reactionscomments
Managing Caregivers...When I was of college age, I was fortunate enough to attend a school that at the time offered a dormitory providing...reactionscomments
A Conversation Between Myself and Heaven...One night, many years ago, before dinnertime, I was sitting at my kitchen table by myself and thinking about Jessie, who had...reactions1comment
The Freedom to Swim...Sometimes I just want to stand up and fling my arms around or jump or spin really fast until I’m dizzy and...reactions1comment
Office of Vocational Rehabilitation (OVR)...I mentioned this program briefly before. This was extremely helpful to our situation when we first were introduced to it in 1995...reactionscomments
