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...I always hoped and wished for a day that we would see incredible achievements in the medical world for the SMA community. I never knew if I would be alive...

...I have mentioned before that I was pretty lucky in the sense that I didn’t require much assistance for a good portion of my life. I never gave much thought...

...As an independent disabled adult, one of my fears is that I will be alone with a caregiver and the caregiver will have an emergency and I will be unable...

...If you are reading this, you have probably been recently told that your lovely child has spinal muscular atrophy (SMA). You probably have had to sit through various appointments with...

...Every parent can relate to those years of watching your adult child living those carefree years after college, beginning their working careers. So now they have the income to enjoy...

...When the New Year rolls around, everyone reflects on the previous year and sets goals for the new one. For those of us with a disability, and more specifically SMA...

...We appreciate you taking the time to answer all of our questions. Your responses will help us better understand life with spinal muscular atrophy. New here? We invite you to...

...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, as with anything else, SMA sometimes adds an...

...My daughter Stella is two and a half years old. Lately, Stella's development has revolved around exploration. Continuing to push her limits in her wheelchair, choosing (and demanding) her favorite...

..."Why is he in a wheelchair?" If I had a dollar every time I heard that phrase, I would be rich. I am an extrovert by nature. I enjoy being...

...Let’s begin with what a PCA is, and what a PCA is not. A personal care assistant should entail three things: Personal, Caring, Assisting I know those attributes seem a...

...When I was of college age, I was fortunate enough to attend a school that at the time offered a dormitory providing 24/7 care for those with disabilities. I was...

...One night, many years ago, before dinnertime, I was sitting at my kitchen table by myself and thinking about Jessie, who had SMA, and her deteriorating condition. Unexpectedly, all of...

...When I first began to read blogs and see posts about others doing their “self-care,” I remember my first thought: “Well I can’t do it “myself,” so it feels more...

...Growing up, I never felt embarrassed or ashamed of the extensive medical equipment that was on display in my bedroom. A BiPAP, suction machine, air concentrator, cough assist, pulse-ox monitor...

...Suzanne and I met over 6 years ago. We both had an attraction to each other. Our friendship grew into a relationship. As we spent more time with each other...

...Sometimes I just want to stand up and fling my arms around or jump or spin really fast until I’m dizzy and fall on the floor. It’s the feeling when...

...I mentioned this program briefly before. This was extremely helpful to our situation when we first were introduced to it in 1995. The goal of this program was to assist...

...I remember being a child and having very bold discussions with health care providers regarding my weight. Their focus was a clinical view of my body. Remember you cannot gain...