Dealing with SMA in the Age of Social Media...This article is more for parents of younger children who have SMA. There are a lot of Facebook groups revolving around SMA...reactions4comments
My Spinraza Experience...I just want to remind everyone that their medical journey will be different from everyone else’s. I share this story in hopes...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
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
SMA Treatment ...What has been your experience with SMA treatment? Share below....reactionsrepliesTreatment
Succeeding as a Disabled College Student...When it came time to start looking at colleges, there were two major items on my list that had to be checked:...reactionscomments
Near Death Experience!...Let me tell you the story of the time I almost died...twice. As a person with a spinal fusion and severe scoliosis...reactionscomments
Donna Waldrop...Donna was previously a health leader on SpinalMuscularAtrophy.net. Donna Waldrop is a 40-ish-year-old live-in caregiver for her adult best friend living with...
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
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
Smart Independence...As an independent disabled adult, one of my fears is that I will be alone with a caregiver and the caregiver will...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
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
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
Getting Christmas Sorted with SMA...As a 31-year-old with SMA, Christmas is always pretty exciting. Ever since I was little, I’ve adored the sparkle of December. But...reactions1comment
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
Why is He in a Wheelchair?..."Why is he in a wheelchair?" If I had a dollar every time I heard that phrase, I would be rich. I...reactionscomments
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...
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
