Articles

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...

My experience with anticipatory grief (AG) began when Jessie was about 3 months old. She was not meeting her developmental goals compared to her twin brother. Our pediatrician advised us...

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...

Advocacy is part of my daily life. I provide family support to newly diagnosed families, I share Emma’s story as a patient ambassador for the treatment she receives, I work...

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...

I have talked about this a few times already. I have also read other parents' points of view on this site.  I can say with certainty that we all come...

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...

Spinal muscular atrophy (SMA) is a rare genetic condition that causes muscle weakness. SMA is caused by a mistake in a specific gene. People with the faulty gene are not...

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...

We were going to have a baby! My wife Zelda, water had broken that night and off we went to the hospital as planned. So, my wife, my parents, and...

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...

Whether it's for vacation, business, a chance to visit far-away relatives or friends, or to attend a special event like a friend's wedding, travel is part of life. For anyone...

Zelda's water had broken that night and off we went to the hospital, as planned. So, my wife, my parents, and her mother crammed into my car, and off we...

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...