Living

Everyone has to deal with barriers. When we think of spinal muscular atrophy we probably assume these barriers are physical. I want to talk about the barriers we put on...

Voting is a fundamental American right, but it has special meaning for people with disabilities, like spinal muscular atrophy, or health conditions. Until federal laws like the Americans with Disabilities...

I recently watched a new movie based on a true story about a young man who unexpectedly became a quadriplegic due to an accident. Even though I have spinal muscular...

Symptoms of spinal muscular atrophy (SMA) can make it hard to use technology. Computer assistive devices and strategies can improve access. They can help people with SMA communicate, maintain independence...

If you’ve lived with spinal muscular atrophy for any length of time you expect to have weakness progress in your body. However, one area I was never prepped for weakening...

Note: This year's theme for SMA Month was SMA does not define us. For Chaz Hayden, a patient leader for SpinalMuscularAtrophy.net, his life as a writer is one way he...

Spinal muscular atrophy (SMA) is a rare genetic condition that causes muscle weakness. People with SMA may have problems with doing daily activities, movement, and speech.1 Having an accessible home...

This year's theme for SMA Month was SMA does not define us. For Ainaa Amaili, a patient leader for SpinalMuscularAtrophy.net, her life as an artist is one way she defines...

This year's theme for SMA Month was SMA does not define us. For Allie Williams, a patient leader for SpinalMuscularAtrophy.net, her life as a musician is one way she defines...

Recently I went on a search to find an accessible hobby that didn’t include technology or staring at a screen. I didn’t have much luck since technology is a key...

The back story: My daughter Jessie, had spinal muscular atrophy [SMA]. She was the first handicapped child to be mainstreamed in our local public school. In the 1970s, federal laws...

I was talking to a mom who has a teen with SMA. They were asking me for advice on what kind of accommodations they should be asking for in school. ...

August is not just SMA awareness month, it is also a month when my sister passed away. 19 August 2013, a date that I will never forget. She was only...

One of the biggest challenges of living with SMA is buying new clothes, especially pants. For me, it’s not possible to go to a store and quickly slip on a...

Today I’m talking about weight. At some point in our lives, most of us deal with weight gain. Back in college, the freshman 15 found me and during Covid weight gain...

The SMA Awareness Month 2022 Giveaway is now closed. Thank you for your interest! August is Spinal Muscular Atrophy (SMA) Awareness Month. About 1 in 6,000 to 10,000 babies worldwide...

August is Spinal Muscular Atrophy (SMA) Awareness Month! Receiving a diagnosis for spinal muscular atrophy can be a long, frustrating process, leading to many lifestyle changes. Once a person is...

Many people with spinal muscular atrophy hire a personal care assistant to provide a wide range of tasks, from personal care, meal preparation and feeding, to transportation and more. For...

Traveling has always been a passion of mine. When I was younger I was fortunate enough to travel to Costa Rica, Guatemala, Mexico, Cuba, Brazil, India, Vietnam, Malaysia, China, Japan...

Recently I felt like I was stuck in a rut with my hobbies or activities to unwind. It seemed like I was either on my computer or watching TV. And...