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...Our lives will be constantly changing. This is true for everyone. Whether you are disabled or not. Life never stays stagnant so how can we adapt and stay positive?  Staying...

...I went to the Cure SMA Conference for the first time when I was 10 with my mom, dad, and grandparents (my mom's parents). To be honest, I was in...

...Recently, I had an experience I didn’t know I desperately needed. I went to volunteer in my daughter’s kindergarten classroom. I was nervous because I did not want my wheelchair...

...Caretaking for a loved one is a full-time gig. I purposely used the word gig instead of job. I really love what I do. I get paid to be with Mike...

...I have been writing about my spinal muscular atrophy journey for a few years now. I often wonder who out there is reading these articles. Obviously it can be intimidating...

...Yes, your role as a parent changes remarkably as your child grows from that little toddler into school age and then again into that teenager. Finally into that young adult...

...Recently, I have had a huge life transition and not a positive one. I feel society often thinks that disabled individuals do not go through hardship. That we don’t have...

...Being paid to take care of someone is a thought that never crossed my mind. Growing up in a large family and being the oldest of 5 kind of made...

...We asked our Patient Leaders if they have any stories (humorous or otherwise) that only someone else with SMA or a disability would understand. Here are their responses: Michaela: One...

...I can't tell you how many times I've Googled "Things to do in the winter when bored," or "Boredom busters" just to be met with able-bodied people telling me to...

...Any sports fan in the Philadelphia area will understand the phrase Red October. For those of you who are not lucky enough to live here and understand the phrase let...

...Being a mother is an adventure in itself, but when you add two young children and a wheelchair to the mix, things get even more interesting! As a mother, with...

...The emotions that each parent truly lives with from that first day our child is given a diagnosis of a neuromuscular disease. In reality, each parent feels that same initial...

...Taking care of someone can be hard and trying. Especially when it is a 24/7 gig. There are days I wish I could get a break. As of right now...