Articles

If you are taking Spinraza® (nusinersen) for spinal muscular atrophy (SMA), then you may be curious about Evrysdi® (risdiplam). Both therapies are available in the United States, but there are...

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...

Spinal muscular atrophy (SMA) is a rare genetic disorder passed from parents to their children. SMA affects the spinal nerves by causing them to waste away. This results in the...

For our firstborn son, the first five years of his life were pretty much routine. We were oblivious to any health problems. The only noticeable activity was that he ran...

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...

Our daughter was diagnosed with spinal muscular atrophy (SMA) at six months old. The doctor told my wife and me that our daughter would need early intervention training, including therapy...

We asked our team of advocates: What challenges have you faced around SMA treatment options?Allie: Due to how the approval of the medication process goes with the trials, which often...

My worst nightmare is the thought of any of my equipment breaking at a time when I need it the most. Whether it be my wheelchair, BiPAP, cough assist machine...

The Media Habits Survey is now closed. Thank you for your interest! Managing a chronic condition is not easy and can be physically and mentally exhausting. What types of media...

I don’t think there’s anyone that actually enjoys going to the dentist. Now, mix in the fact that this could be quite a unique situation or a difficult one if...