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
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...reactions5comments
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...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...reactions2comments
Personal HeroesWe asked our Patient Leaders to tell us about the person who has helped them the most as they've navigated living with...reactionscomments
Weight Management and Spinal Muscular Atrophy - Take Our Quick PollsFor people living with chronic health conditions, managing weight can be a particularly challenging task. Balancing the demands of managing symptoms and...reactionscomments
Rare Disease DayThe last day of February is Rare Disease Day! To celebrate and acknowledge this important day in the rare disease community, we...reactionscomments
How Do You Handle Cold Weather?We asked our Patient Leaders here at SpinalMuscularAtrophy.net, "How do you handle colder weather?" Does cold weather impact their SMA symptoms? Do...reactionscomments
An Overview of Disability Rights LawsThe US government has many laws that protect and support rights for disabled persons. People with spinal muscular atrophy (SMA) have certain...reactionscomments
Unlearning Ingrained AbleismI'll be honest here- I didn't grow up around anyone with a disability. Growing up, classrooms in my school were segregated. I...reactions1comment
Cold and Flu SeasonThe time of year is upon us when the temps are dropping, the holidays are approaching and the terrifying “F” word is...reactions1comment
Memories of the Labor Day TelethonI’m sure we all can remember that Labor Day meant watching the Jerry Lewis’s Muscular Dystrophy Telethon. It was always an emotional...reactionscomments
Disability BenefitsConditions like spinal muscular atrophy may prevent you from working, as well as be expensive to treat. Getting approved for disability benefits...reactionscomments
