Education
Advocacy
Community
Partnership
At Coming Together for a Cure, we are dedicated to transforming the lives of those affected by rare diseases through education, advocacy, community, and partnership. With an unwavering commitment to expanding awareness, funding critical research, and connecting families to vital resources, we strive to create lasting change so that no one faces their rare disease journey alone.
Core Areas of Focus
Why Stem Cells?
Because Rare Disease Impacts Everyone
Ryan Benton was diagnosed with Duchenne Muscular Dystrophy (DMD) at three years old and told he wouldn’t live past his teens. At 22, with no options left, he took a chance on an unproven stem cell treatment. In 2015, he became the first and only person with DMD to receive FDA-approved allogeneic adult stem cell therapy thus starting his journey with new muscle growth and reversing the progression of his disease. His groundbreaking treatment, approved for compassionate use, marked a historic moment in medical research.
Ryan passed away on October 28, 2023, at 37 years old, far exceeding expectations. He lived with resilience, joy, and determination, proving that hope can defy the odds. His story is not over and with your support, we can fund groundbreaking research and connect families to life-changing resources. Together, we can honor Ryan’s legacy and bring hope to those fighting DMD and other rare diseases.
Rare Disease Impact Stories
Duchene Muscular Dystrophy and the Importance of Advocacy
“You went from a normal family then all of a sudden, something happens. Adversity hits home.”
Elie's journey from concerned parent to passionate advocate offers profound insights into the challenges facing rare disease communities and the urgent need for change in how we approach treatment development.
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FROM UNABLE TO WALK TO CLIMBING KILIMANJARO: A Stem Cell Therapy Success Story
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A BEACON OF HOPE: Kristi and Oliver’s Journey with Stem Cell Therapy
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FIGHTING FOR HOPE: A Multiple Sclerosis Patient's Journey to Stem Cell Treatment and Advocacy
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FROM "MAY NEVER WALK" TO BASEBALL PRACTICE: Leo's Stem Cell Success Story
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BEYOND ONE CHILD'S FIGHT: A Father's Mission to Transform Rare Disease Treatment
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"I WISH WE HAD DONE IT EARLIER": A Mother and Son Share Their Stem Cell Therapy Journey
Were you or a loved one diagnosed with a rare disease and are interested in exploring stem cell therapies?
Fill out the form to be contacted by a member or our Pathways Consultation team to explore your next steps.