Being a Voice for the Spinal Muscular Atrophy Community

Our community needs a true advocate and someone who understands firsthand the emotional and physical journey of living with spinal muscular atrophy (SMA). We need someone who has personally faced the diagnosis during the prime of their life, or a parent who has 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.

For many years, I struggled with hopelessness. Until roughly three and a half years ago, I had resigned myself to the belief that no medication could slow the progression of this disease. I 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. Yet, their hard work and advocacy kept the hope alive for many of us, including myself, and for that, I remain deeply grateful.

I now find myself among the lucky ones. At sixty I am blessed to live a mostly normal and productive life. I work full-time, travel, and enjoy vacations activities that some with SMA can’t experience. This blessing does not come without a sense of guilt. I often feel a heavy heart knowing that others with the same diagnosis struggle so much more. Yet many of my new friends within the SMA community have taught me to see my situation not with guilt, but with gratitude. They see it as a blessing, and I now view it as a calling and responsibility to give back and support those who may not have the same opportunities or resources.

My wife has been my biggest supporter throughout this journey. She has consistently encouraged me to share my story, believing that my experiences could help others navigate their own difficult paths. Following her advice, I created a Facebook group that is raw, unfiltered, and completely 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 is vital that we change that narrative.