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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

Supporting Mental Health and Wellbeing for Individuals with FA and Caregivers: Key Insights and Recommendations

At the Fanconi Cancer Foundation (FCF), we understand the critical importance of addressing mental health alongside physical health for individuals with Fanconi anemia (FA) and their family caregivers. Recent research on the mental health challenges faced by adults with FA...

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Recap of the 36th Annual Fanconi Anemia Scientific Symposium and Adult Retreat

The 36th Annual Fanconi Anemia (FA) Scientific Symposium and Adult Retreat took place in Charlotte, North Carolina in September 2024, and brought together researchers, clinicians, advocates, individuals with FA and community members from across the globe. This year’s theme, “It Takes...

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FA Adult Retreat & Scientific Symposium: A Homecoming for Patients, Families and Researchers

Hello, this is FA Adult Council member Lexi Marshall with a recap of the FA Adult Retreat in Charlotte, North Carolina. To back up, I attended my first FA Adult Retreat and Scientific Symposium as a newly diagnosed person with...

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