Guest Voice: Speaking out on behalf of the SMA community

Jeffrey Selby is a proud husband to his wife, Angie, whom he married in 2017. Together, they’ve built a life full of love and laughter. Jeff, a licensed real estate agent, has spinal muscular atrophy (SMA) type 3. He spends his time supporting others with the disease. For Jeff, SMA stands for “strength, magnificence, and attitude,” values he tries to live by every day. He believes in living with purpose, making meaningful connections, and finding joy in the moments that truly matter.

For many years, I struggled with hopelessness. Until roughly three and a half years ago, when I started receiving treatment with Evrysdi (risdiplam), I’d resigned myself to the belief that no medication could slow the progression of my disease. I’d accepted that I was destined to become wheelchair-bound.

During that time, although I appreciated the efforts of countless organizations dedicated to raising funds and conducting research, it still felt like true progress was out of reach for me. Yet their hard work and advocacy kept the hope alive for many of us, myself included, and for that, I remain grateful.

I now find myself among the lucky ones. At 60, I’m blessed to mostly live a normal and productive life. I work full time, travel, and enjoy vacations and other activities that some folks with SMA can’t experience.

I’ll admit, though, that this blessing comes with a sense of guilt. My heart is heavy knowing that others with the same diagnosis as me struggle much more than I do. Yet many of my new friends in the SMA community have taught me to view my situation with gratitude rather than guilt. They see it as a blessing. I now think of it as a calling and a responsibility to give back to the community and support those who may not have the same opportunities or resources that I do.

Jeffrey Selby and his wife, Angie, enjoy visiting new places, like this restaurant in Cape May, New Jersey. (Courtesy of Jeffrey Selby)

Throughout this journey, my wife has been my biggest supporter. She has consistently encouraged me to share my story, believing that my experiences can help others navigate their own difficult paths. Following her advice, I created a Facebook group that is raw, unfiltered, and real.

My goal with this group is simple: to share my life openly with those who might be struggling and to offer them a sense of hope for a brighter and more positive future. Far too often, adults with SMA are overlooked and left without the support and recognition they deserve. I believe it’s vital that we change that narrative.

Our community needs true advocates, people who understand firsthand the emotional and physical journey of living with SMA. We need people who have personally faced the diagnosis process during what should’ve been the prime of their lives, or parents who’ve had to confront the devastating news that their child will live with this condition. Only through lived experience can one truly understand the challenges and victories that come with SMA, and only then can they effectively represent and inspire others.

I’ve come to deeply believe that SMA can stand for “strength, magnificence, and attitude,” because these words perfectly capture the spirit of our community. Our journey requires not only physical resilience, but also an unbreakable spirit and a positive outlook. We must stand tall and become the voice for the next generation. United together, we can strengthen our community and ensure that no one feels isolated or forgotten.

Despite the progress we’ve made in awareness and treatment, major care gaps still exist for people with SMA, including the availability of neurologists who specialize in this rare condition.

Through conversations with many new friends on Facebook, I’ve learned that a recurring theme is the struggle to access specialized care. Many people are unable to obtain the medications they need or visit doctors who truly understand SMA. Some can’t afford the travel or treatment costs, and many feel trapped in a system that doesn’t provide the support they desperately need.

I decided to transfer my care to a facility over six hours from my home solely because they had a doctor who specializes in treating SMA. It wasn’t an easy choice, but it was necessary for my health and my future.

Unfortunately, not everyone has the means or ability to travel such long distances. Many are bound by financial or physical challenges that make travel nearly impossible.

Living with SMA often brings financial strain, mental health struggles, and feelings of isolation. Some of the most heartbreaking stories I hear are from people who have trouble paying their bills or are battling depression because of the limitations this disease imposes on their lives.

Beyond the critical need for medical advancements and new treatments, our community needs more emotional and social support. No one should feel like they’re stranded on an island without a bridge to the mainland.

We must work to build that bridge, one that’s made of understanding, solidarity, and genuine compassion. Our community thrives when we uplift one another, share our victories, and help shoulder each other’s burdens. Through collective effort, we can create true change, ensuring that everyone living with SMA has the chance to live with dignity, hope, and purpose. Together, we are stronger. Together, we can make a difference.

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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.