Cure SMA Conference TipsI 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...reactions1comment
The Mom In The WheelchairRecently, 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...reactions1comment
Maintaining Relationships with Family and FriendsCaretaking 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...reactions1comment
A Family AffairI 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...reactions2comments
We Flow with the Changes in Our ChildYes, 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...reactionscomments
Disability Does Not Make You Immune to HardshipRecently, 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...reactions1comment
Caring For A Loved OneBeing 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...reactionscomments
Where I Got Stuck, and Other StoriesWe 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...reactionscomments
Boredom BustersI 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...reactions5comments
Red OctoberAny 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...reactionscomments
Parenting From a WheelchairBeing 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...reactions1comment
Honest Look at a Parent’s HeartbreakThe 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...reactionscomments
How I Find Worth in CaretakingTaking 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...reactionscomments
Large Medical Team Helps a Child With SMAWhen 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...reactionscomments
My First Wheelchair Seating ClinicIn 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...reactionscomments
Becoming Financially IndependentThe 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...reactions2comments
Wheelchair Recommendation and Favorite FeaturesAs 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...reactions1comment
Personal HeroesWe 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...reactionscomments
Body PerceptionOne 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...reactions1comment
Escaping the Cold WintersMike 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...reactionscomments
