Our Story & Mission
Our Journey
On January 20, 2023, our world changed forever. It was on this day that we received the devastating news that our beloved 6-year-old grandson Jonah had been diagnosed with Duchenne Muscular Dystrophy (DMD). This marked our "D day," a moment that thrust us into a journey we never anticipated, and one that many in our community know all too well.
Duchenne Muscular Dystrophy is a cruel adversary, a terminal muscle-wasting disease that silently steals away the joys of childhood. Prior to Jan 2023, this affliction was unknown to us, and it quickly became apparent that we were not alone in our ignorance. Duchenne's is a rare disease, affecting only 1 in 3500 boys born, yet its impact reverberates deeply through the lives of those touched by it.
Why 5 Exons?
The birth of 5 Exons symbolizes the inception of a nonprofit dedicated to supporting boys affected by Duchenne Muscular Dystrophy (DMD). Named after specific DNA components crucial for the dystrophin gene, exons play a vital role in maintaining muscle function. Jonah, our grandson, is missing exons 46-50, underscoring the unique challenges he faces with DMD. Yet, 5 Exons extends its reach to encompass all boys affected by DMD, embodying a beacon of hope, support, and advocacy for families.
Our organization is driven by a commitment to equip families for their distinctive journeys, providing strength, resources, and a lasting sense of community to endure the relentless progression of this challenging disease.
Our Commitment
Equipping Families for the Duchenne Journey
At 5 Exons, our mission is crystal clear: to stand unwaveringly with families affected by Duchenne, providing them with the tools and support necessary to navigate the challenging road ahead.
Our Vision: A Haven for Hope
Long-Term Goal: A Facility for New Beginnings
We envision a future where families, upon receiving a Duchenne diagnosis, can find solace and support at our facility—free of charge. This haven will be equipped with on-site counselors, invaluable resources, and opportunities for familial joy. We understand that when faced with a life-altering diagnosis, the world seems to pause. Our aim is to offer a brief respite during this challenging moment, providing a supportive environment for families to gather strength and knowledge.
Short-Term Commitment: Practical Support
Our short-term goals revolve around tangible assistance. We strive to aid families with practical challenges such as providing wheelchairs, wheelchair-accessible vans, or assistance with other associated costs. By addressing immediate needs, we hope to ease the burdens families face on this journey.
Support 5 Exons Now!
Join us in creating positive change with 5 Exons. Your donation makes a difference.