Being a Voice for the SMA Community

Jeff Selby's story about living with Spinal Muscular Atrophy (SMA) is a journey filled with emotional and physical challenges that only those directly affected can truly understand. Whether diagnosed in adulthood or navigating it as a parent of a child with SMA, the impact is life-changing. Real advocacy comes from lived experience and that's what drives my passion to raise awareness, offer support, and inspire hope within our community.

For many years, I felt hopeless. Until just over three years ago, I believed that no treatment could slow the progression of this disease. I expected to become fully wheelchair-bound and simply accepted that fate. Although I appreciated the efforts of organizations focused on research and advocacy, progress still felt far away. Their dedication, however, kept a spark of hope alive—for me and for many others.

Today, at 60, I’m fortunate to live a productive, mostly independent life. I work full-time, travel, and enjoy life in ways some with SMA cannot. That blessing often comes with guiltbut my connections within the SMA community have helped me reframe it as gratitude and purpose. I now see it as my responsibility to use my experience to give back and uplift others who face greater challenges.

With constant support from my wife—my rock through this journey I began to share my story. She encouraged me to be open, to help others by being real and vulnerable. That led to the creation of a Facebook group where I share my life unfiltered, hoping it brings comfort, strength, and positivity to others navigating SMA. Adults with SMA are often overlooked, and it’s time we changed that.

I believe SMA also stands for Strength, Magnificence, and Attitude qualities I see every day in this community. We need to be voices for those who feel voiceless, and advocates for future generations. Despite advances in treatments, gaps in care still exist. Many can't access the right specialists or afford life-changing medications. Financial burdens and emotional isolation are common.

To get proper care, I had to transfer my treatment to a facility over six hours away because they had a doctor who truly understood SMA. Many people can’t make that choice due to cost or physical limitations. They remain stuck in systems that don’t meet their needs.

On top of medical challenges, SMA brings mental health struggles and financial hardship. I hear from people who are depressed, overwhelmed by medical bills, or who feel completely alone. Our community needs more than just medicine we need connection, compassion, and support.

We must build bridges not walls between us. Bridges of understanding and unity. Only together can we create real change, ensuring that everyone with SMA lives with dignity, hope, and a sense of purpose.

Together, we are stronger. Together, we can make a difference.