Articles

When it came to my level of independence, I have been pretty lucky. An area of my life that was always a little difficult was traveling. After I graduated college...

I have regrets! Not with my daughter who had SMA and passed away at 17 years old, but for myself with regrets...survivor regrets. My daughter, Jessie, was a twin with...

Spinal muscular atrophy (SMA) can impact different parts of your health and daily life. People with SMA must see many types of specialized healthcare professionals. This includes doctors as well...

This is the question that every person with SMA will be asked more times than anything else in their life. Parents who have children with SMA probably hope that one...

I stopped working back in 2008. I was working for a bank in a mortgage call center. Some of you younger readers probably don’t remember the financial collapse back then...

There are many different providers who treat spinal muscular atrophy, but certain factors like location, insurance, access, and cost can present challenges. It is important to find providers you are...

Mike’s brother, Dan, was a competitive runner since fourth grade and he was Dan’s biggest fan and supporter. By high school, Mike joined the track team as their manager. The...

Living with SMA, it often feels like we’re slowly losing strength or independence daily. Of course, now with the new medications that are available, some of us are seeing improvements...

In the United States, there are harsh limits placed on disabled people. Limits on how much money they can make, how much property they can own, or savings they can...

In the summer of 1988, we moved our family to a new home. Mike was starting 6th grade, our son Daniel started 4th, and Allison entered 1st grade. This was...

Guilt can be rough to deal with. Everyone deals with guilt on some level. I’m sure my parents and siblings have dealt with guilt over my SMA. Anytime someone close...

Affording your spinal muscular atrophy (SMA) drugs and other treatment costs can be challenging. Luckily, there are programs that may be able to help offset the cost of treatment. One...

Living life in a wheelchair, you often encounter and have to react to two different situations that sound the same: stairs and stares. While stairs need to be handled on...

Previously, I wrote an article about my love/hate relationship with my g-tube (Steve Stoma). One of the main reasons why it felt like such a big deal was keeping the...

Sitting down and sharing a meal with family and friends is one of the most basic social things to do. I love food. I am also very social and love...

Mobility aids help many of us with SMA live as independently as possible. We use wheelchairs so we can get around as long as where we are going is accessible...

The story begins...My daughter, Jessica was born with spinal muscular atrophy [SMA]. She was a twin and my son did not have SMA. So, I was able to compare developmental milestones by...

Mike usually doesn’t like to use disabled parking spaces. There are different types of disabled parking spaces: regular and van-accessible. I’ve learned being with Mike that you really shouldn’t use...

Having the inability to raise oneself out of a power chair to go to the bathroom or to the bed can be daunting as one gets older and heavier, especially...

Do you want more information about spinal muscular atrophy? Are you looking for support? Do you want to talk to others affected by this condition? If you answered “yes” to...