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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In Loving Memory of Imroze Marzban Ardeshir

April 15, 1983 – December 27, 2017By Daisy & Marzban Ardeshir The story below was shared by Imroze’s parents, Daisy and Marzban Ardeshir, in remembrance of their daughter’s strength, grace, and enduring spirit. Our second child, Imroze, was diagnosed with...

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A Remarkable Gift for the FA Community

We’re thrilled to share that Rena and Paul Rice, parents of two children with Fanconi anemia—Sydney (19) and Blake (25)—have made an extraordinary commitment to the FA community: a gift of $100,000 per year for the next three years to...

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