Medicare Denials and Wonderful NonprofitsI recently wrote about my first wheelchair seating clinic experience. Since I wrote that article I was denied by Medicare for the...reactions1comment
Define LoveDefine love. It would be a broader definition for everyone. As I moved into the adulthood phase I started to get involved...reactionscomments
Therapy and Mental Health with SMAWarning: This post discusses my experience with mental health including anxiety and depression. Reader discretion is advised. I wanted to discuss my...reactions2comments
Living With a Disability: Movie RecommendationsWe asked our Health Leaders, "What good movies or television shows give a credible account of living with disability?" Here are some...reactions2comments
An Accessible Cruise VacationI just went on a birthday cruise on the Disney Wish with my mama! I wanted to share about accessibility and what...reactions3comments
Dressing Room Experience as a Wheelchair User: Tips and Personal InsightsTrying on clothes in a department store can be a daunting task for anyone, but it can be even more challenging if...reactionscomments
Mental Health Awareness MonthMay was designated National Mental Health Awareness Month in 1949 by the United States Congress due to the increased number of veterans...reactionscomments
The Promise of TreatmentOur family journey began when Mike was five years old. After a barrage of testing and doctor appointments, we were given the...reactionscomments
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...reactions1comment
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...reactions1comment
Patient LiftsHaving the inability to raise oneself out of a power chair to go to the bathroom or to the bed can be...reactionscomments
Traveling With SMA: What to ConsiderTraveling is a great way to relax, learn about other cultures, and bond with your family. People with spinal muscular atrophy (SMA)...reactionscomments
Jessie's Bucket List - What is on Yours?Everyone has a bucket list. A bucket list is something you want to do or experience before you die. In 1989, Jessie...reactions1comment
Disability Costs Too MuchI often get told how I should be grateful because the government pays for my spinal muscular atrophy treatments, or my durable...reactions1comment
Empty Nest AgainAs any typical parent will experience the day when your last child leaves the childhood home. At this point we are called...reactionscomments
If You Fall, I’m Going Down With YouMy 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...reactions1comment
Body PerceptionOne of my missions is giving teenagers the confidence that life isn’t all doom and gloom when dealing with a disability. Back...reactions1comment
Van-Accessible ParkingMike usually doesn’t like to use disabled parking spaces. There are different types of disabled parking spaces: regular and van-accessible. I’ve learned...reactions3comments
Celebrating the Holidays and Special OccasionsWe asked our patient leaders about how they celebrate the holidays: Are there any special accommodations they and their family/friends have adopted...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...reactionscomments
