Being a Voice for the SMA Community and Beyond.

I am a 61 year old man living with Spinal Muscular Atrophy Type III. SMA has shaped my life physically, emotionally, and spiritually. It has taught me perseverance, humility, patience, and a deep reliance on faith through every season. I am proud to be part of the SMA community, and that will always remain at the core of who I am.

Over time, I have come to understand that while SMA is my diagnosis, it is not the only neuromuscular condition that carries similar challenges. There are many neurological and neuromuscular diseases, including Myasthenia Gravis and Charcot Marie Tooth disease, that share common struggles such as muscle weakness, fatigue, mobility loss, accessibility barriers, and the ongoing need for better treatments and understanding.

As doors have opened through relationships and partnerships, I have stepped into a broader role within the neuromuscular community. Today, I work alongside pharmaceutical companies and nonprofit organizations as a patient advocate and consultant. I contribute lived experience and practical insight to clinical trial discussions, research development, and treatment advancement efforts. My goal is to help ensure that patient voices are not only heard but meaningfully integrated into the decisions that shape care and innovation.

Sea of Strength was created to encourage resilience, community, and purpose. While its foundation is firmly rooted in SMA, its mission now extends across the broader neuromuscular community. We may carry different diagnoses, but many of us share the same foundational challenges and the same hope for progress.

My faith continues to guide this work. I believe our stories matter. I believe our voices matter. And I believe that when we stand together across conditions, we strengthen the entire neurological community and help move it forward with strength, advocacy, and hope.

Together, we ride the wave.