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An Unforgettable Moment from the Sidelines: My SMA Journey

This content is sponsored by Biogen and is intended for U.S. audiences only. Any other present or future content posted by the contributor, not expressly designated as “Biogen sponsored content” is not associated with Biogen.

Growing up in Indiana, my twin brother and I were athletes who spent countless hours on baseball diamonds, basketball courts and golf links. I thought I was in decent shape, until I started struggling on my runs and during the back nine holes of golf tournaments. My first instinct was to question my physical conditioning. Then, something strange happened: My twin started experiencing the same symptoms.

When we told our family doctor about it the summer before we went to college, he sent us to a team of specialists, who ran a gamut of tests and blood work. A few weeks later, the startling results came back: We were both diagnosed with spinal muscular atrophy (SMA), a rare genetic disorder that causes progressive muscle weakness.

Back then, much less was known about SMA and there were no approved treatments. My brother and I both dreamed of becoming athletic trainers and it was hard to process the neurologist’s advice to prepare for desk jobs that would be less taxing on the body. I returned every six months for follow-up testing, but the doctor didn’t have much new information to provide. Frustrated, I stopped going altogether.

Instead, I disregarded his advice and refused to give up on my dream job. I worked out daily, no matter how exhausted it made me. If someone asked me what was “wrong” with my legs, I’d tell them I injured my knee. Although my brother was going through the same experience, living with SMA felt personal, so we navigated our disease journeys independently. 

With a lot of hard work and support, I pursued my dream of becoming an athletic trainer at a local high school. It took several years into my career to finally find the courage to open up about my SMA and the outpouring of support I received meant so much to me. My team understands that it may take me a few seconds longer to get downfield, but I’m always there, and if I need help carrying a player off the field, they have my back.

One of the most unforgettable game moments I experienced didn’t happen on the field – it happened on the sidelines. Our team physician told me about the first-ever approved treatment for SMA. 

At that point, routine activities like walking and climbing stairs were getting harder, so the news came at a great time. This physician connected me with a neurologist – the first one I had seen in 24 years – who taught me about the science behind SMA and the encouraging results patients were experiencing on SPINRAZA® (nusinersen) 12mg injection for intrathecal use, the first-ever approved treatment for children and adults who live with SMA. Please see full Prescribing Information and Important Safety Information for more information about SPINRAZA. When he told me that I was a good candidate for the new medicine, my wife broke into tears, and for the first time in nearly 25 years, I was filled with hope. 

The neurologist explained that SPINRAZA is administered intrathecally, which means that the treatment is given in the lower back and goes directly in the central nervous system. He also outlined the potential serious risks and common side effects, including lower respiratory infection, fever, constipation, headache, vomiting, back pain and post-lumbar puncture syndrome. I took all of this into consideration, and for me, the decision to go on treatment has absolutely been worth it.

I’ve been on SPINRAZA for about three years now and I plan on staying with it. I feel like I have more strength in my legs while standing during a football game and can walk confidently down the field. This has been my personal experience of course, and individual results may vary. 

More recently, I achieved a personal goal of mine: I completed a kayaking and biking trek in the Florida Keys with other like-minded individuals with medical setbacks of their own, as part of the Project Athena Foundation. When we reached our resting place after the second night of this adventure, I cried. After working so hard for so long refusing to let my SMA define me, I couldn’t believe what I had just achieved. For me, it wasn’t about competing against others; my goal was to cross the finish line while going at my own pace.

Since then, I completed a few other treks on my own and now plan to bring my daughter with me on a future adventure. I’m looking forward to every single moment. 

I am grateful beyond words for the strength and hope granted to me by my care team, my family, my work friends and SPINRAZA – and to my neurologist for a conversation that changed my life. 

Today, when I’m facing new challenges, I think about one of my favorite motivational quotes from Robyn Benincasa, founder of The Project Athena Foundation:

“During the adventures, there are a lot of moments when you are questioning whether you can keep going. I see that in the participants’ faces. Inside I’m saying, just wait. When you take that next step that you could not take. And then there is another 100 steps that you didn’t think you could take. When you’re so far over that line of what you ever understood you were capable of, all of a sudden you realize you can do anything.” 

INDICATION

SPINRAZA® (nusinersen) is a prescription medicine used to treat spinal muscular atrophy (SMA) in pediatric and adult patients.

IMPORTANT SAFETY INFORMATION

Increased risk of bleeding complications has been observed after administration of some similar medicines. Your healthcare provider should perform blood tests before you start treatment with SPINRAZA and before each dose to monitor for signs of these risks. Seek medical attention if unexpected bleeding occurs.

Increased risk of kidney damage, including potentially fatal acute inflammation of the kidney, has been observed after administration of similar medicines. Your healthcare provider should perform urine testing before you start treatment with SPINRAZA and before each dose to monitor for signs of this risk.

The most common possible side effects of SPINRAZA include lower respiratory infection, fever, constipation, headache, vomiting, back pain, and post-lumbar puncture syndrome.

These are not all the possible side effects of SPINRAZA. Call your healthcare provider for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

Before taking SPINRAZA, tell your healthcare provider if you are pregnant or plan to become pregnant.

Please see full Prescribing Information.

This information is not intended to replace discussions with your healthcare provider.

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