Living

It can be difficult to find a provider who checks all the right boxes. A good relationship and someone who you can trust is really important to feel in control...

When SMA treatments first became available, I honestly wasn’t sure how I felt. At the time it was just Spinraza which I never tried due to other medical issues and...

When living with a disability like spinal muscular atrophy, we heavily rely on equipment that gives us our independence. This freedom is wonderful until it breaks. I don’t know about...

I think we all can remember watching the MDA Telethon over the years. In addition to raising funds for research, a week at a summer camp for kids with a...

I am coming up on my 12th year of using a personal care assistant (PCA), who isn't a personal relative. There are pros and cons to using a PCA in...

Living with spinal muscular atrophy takes a lot of preparation and planning ahead. We reached out to our team of advocates here at SpinalMuscularAtrophy.net to find out what they always...

I’m in my mid 40’s and I find it encouraging that mental health has become more out in the open. I know living with spinal muscular atrophy has probably made...

Spinal muscular atrophy has a host of challenges we all deal with at some stage. While all of our journeys with SMA are very different, I have always found that...

The best way I can describe living with a chronic disease like SMA is that I am a cellphone and my disease is all of the open windows in the...

Every two years I have to get minor outpatient surgery to change my peg g-tube. This unfortunately has to be performed in the main operating room in the hospital so...

I’m a firm believer that dating your spouse is equally as important when you’re 5 or 10 years into marriage than it was when we were in those first months...

We asked our team of advocates: What advice do you have for younger people with SMA?Allie: Learn how to adapt what you enjoy doing to your specific needs. If you...

I am a speech pathologist. My daughter had spinal muscular atrophy. One of my daughter’s needs was speech therapy services. Since I was too close to this situation, I chose...

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Living with a disability can make us stubborn in our ways. I know for me it’s the inability to control what my body can do. I think what we lack...

Growing up, it seemed like my parents were always fighting with the school district about something. Most of the challenges I faced as a student were physical like being able...

Having the right people around you in life is so vital. Especially in a world where so much is said online, and people can hide behind computers to share opinions...

When it comes to finding a specialist for spinal muscular atrophy, there are many different factors that come into play. Is the personality a good fit? Is this person up...

I was recently on a Zoom call with other people who were disabled. One of the moderators who wasn’t disabled made a comment that drove me nuts. She said she...

We asked our team of advocates: What have advancements in treatment for spinal muscular atrophy meant to you?Allie: The celebration of life. I have watched my disease take away so...