Directory

Mary-Beth Johnson

Member

Mary-Beth is a 27-year-old private chef based in Chicago. She works as a private chef and shares her culinary creations with the world through her blog, Heart of Celebration. A talented writer and speaker, Mary-Beth has spoken at FARF fundraisers, meetings and scientific symposia. She brings an authentic and unique perspective to what it means to live with FA in today’s world and has openly shared her story with the FA community.

The Latest

News & Events

2025 Research Updates

Research is the answer to one day making FA a treatable, manageable disease. Here, you'll discover the most recent strides in FA research and activities funded by FCF. Every quarter, we'll bring you updates on newly funded grants, ongoing projects, and significant milestones.

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Celebrating Fatma Issak, 2025 Winn/Byrd Award Recipient

A Global Commitment to Care Born in Zanzibar and now living in New York, Fatma has dedicated herself to improving how healthcare is experienced, not just delivered. She currently works as a medical scribe at an OB-GYN clinic, supporting patients...

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Honoring Dr. John E. Wagner for a Lifetime of Impact

At the 2025 Fanconi Cancer Foundation Scientific Symposium in Minneapolis, the Foundation presented its Lifetime Achievement Award to Dr. John E. Wagner, MD, in recognition of his decades of groundbreaking work and unwavering commitment to improving the lives of people with Fanconi anemia (FA).

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