COLUMBUS, Ohio — Andelyn Biosciences Inc., a patient-focused cell and gene therapy Contract Development and Manufacturing Organization (CDMO), today announced the unveiling of The Andelyn Foundation, a nonprofit organization dedicated to supporting families living with rare and ultra-rare diseases through awareness, fundraising, and compassionate community engagement.
More than 10,000 rare diseases have been identified worldwide, affecting approximately 1 in 10 Americans. Yet 95% of those diseases still lack FDA-approved treatment. For many families, the journey begins with a long search for answers, often involving years of navigating misdiagnoses and uncertainty, limited awareness of the condition, and few treatment options. Along the way, families frequently become researchers, advocates, and care coordinators for their loved ones while bearing the emotional and financial burden that comes with the unknown.
In response to this reality, The Andelyn Foundation was created to support families navigating rare disease and to build greater awareness and community around their journey.
“Our work has always been guided by the belief that science and compassion go hand in hand,” said Wade Macedone, CEO of Andelyn Biosciences and member of The Andelyn Foundation Board. “The Andelyn Foundation allows us to live that belief in a different way by exposing the human stories behind the science. We are committed to raising awareness for the rare disease community, amplifying family voices, and offering tangible support so that no family feels alone.”
“Behind every therapy in development is a family living that journey every day,” said Julie Kilbarger, Andelyn Foundation Board Member and mother of Andrew, part of Andelyn’s namesake, whose life was forever changed by a diagnosis of Duchenne muscular dystrophy (DMD) in early childhood. DMD is a rare genetic neuromuscular disorder caused by mutations to the DMD gene, resulting in the dysfunction or absence of the dystrophin protein. “As a mom, I have walked the uncertainty, the hope, the setbacks, and the breakthroughs alongside my son. That lived experience is why this work matters so deeply to me. The Andelyn Foundation exists to raise awareness for families navigating these realities, to amplify their voices, and to remind every parent that they are not alone. We are committed to standing beside families in both the hard moments and the hopeful ones, and to ensuring an entire community is walking with them.”
A Community Built Around One Family at a Time
The Andelyn Foundation centers its efforts on two core priorities:
Supporting Families
Each year, the Foundation directs proceeds to a selected patient-founded organization, providing meaningful financial support where it matters most—whether for research advancement, travel, clinical readiness, or urgent care needs.
Raising Awareness
Through storytelling and community engagement, the Foundation works to ensure that rare diseases are seen, understood, and supported, helping “rare” feel less isolating.
This work comes to life through the annual Fore One Purpose Golf Tournament, a community-driven event that brings together partners, sponsors, and advocates around one shared commitment: to stand behind a family facing a rare disease.
Since its inception, Fore One Purpose has donated $100,000 in direct support.
Proceeds from the first two tournaments have supported Elly’s Team and CureCMT4J.
On Monday, August 24, 2026, the Foundation will host the third annual Fore One Purpose tournament at The Country Club at Muirfield Village in Dublin, Ohio. Community sponsors, partners, and donors will once again come together to surround a selected family organization with support and generosity, continuing the Foundation’s commitment to meaningful and focused impact.
About The Andelyn Foundation
The Andelyn Foundation is a registered 501(c)(3) nonprofit organization established by Andelyn Biosciences to support families living with rare and ultra-rare diseases through fundraising, awareness, and community engagement. Focusing on uplifting one patient-founded organization each year, the Foundation brings people together to provide meaningful financial support and amplify stories that deserve to be seen and heard. Rooted in compassion and carried by hope, The Andelyn Foundation works to ensure families navigating rare disease feel recognized, supported, and never alone.
About Andelyn Biosciences, Inc.
Andelyn Biosciences is a full-service cell and gene therapy CDMO focused on the development, characterization, and production of viral vectors for gene therapy. With more than 20 years of experience, Andelyn’s deep scientific expertise has resulted in the production of cGMP material for more than 450 clinical batches and 75 global clinical trials. Operating out of its development and manufacturing facilities in Columbus, Ohio, Andelyn supports its clients in developing cell and gene therapies from concept through plasmid engineering and manufacturing, process and analytical development, and cGMP clinical and commercial manufacturing. Andelyn can accelerate programs and deliver high-quality products by developing and manufacturing processes on its configurable, data-driven AAV Curator® Platform or tech transfer in an established client program. Capabilities include cGMP manufacturing for suspension processes up to 2,000 liters and adherent processes. A rigorous quality system, regulatory support, and supply chain vertical integration further advantage clients in bringing their critical therapies to market. For more information, visit andelynbio.com.
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