Articles

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...

When our daughter, Jessie was born we were overjoyed. We were unaware of what was in store for my daughter and our family. Jessie was not meeting her age-related milestones...

In previous articles, I’ve written about perception. How we are perceived is a big part of ourselves. When I went off to college, I knew that I wouldn’t be able...

The other day, I visited the Supplemental Security Income (SSI) office. I had to visit because I now have my first job. I wanted to make sure that I would...

As someone with spinal muscular atrophy, I understand the importance of selecting the correct wheelchair. Not only is it a huge financial commitment but is a piece of our body...

We asked our Patient Leaders to tell us about the person who has helped them the most as they've navigated living with SMA. Here are their responses: Michaela: My sister...

One of my missions is giving teenagers the confidence that life isn’t all doom and gloom when dealing with a disability. Back in 2017 I was lucky to be invited...

Mike and I are thinking about embarking on another road trip soon. These Pennsylvania winters are so hard on Mike in his condition with spinal muscular atrophy. When it’s cold...

My sweet child, she’s fearless. She’s put me at max speed. She’s "Daddy look at me!" She’s full of constant laughter and joy. She's trapped in a body that won't...

The dating landscape with social media and dating apps is not always an ideal way to meet others when you have a disability like spinal muscular atrophy. These dating apps...

As any typical parent will experience the day when your last child leaves the childhood home.  At this point we are called “empty nesters”.  This is met with different emotions. ...

I often get told how I should be grateful because the government pays for my spinal muscular atrophy treatments, or my durable medical equipment and I shouldn’t want for more...