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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Amy Vangel
Member
Amy is 30 years old and lives with her fiancé, Matt in Weymouth, Mass., where she currently works as a nanny for two young boys. She was diagnosed with FA in 1995 and underwent an unrelated stem cell transplant in 2002. Recently, she was diagnosed with squamous cell carcinoma and was successfully treated. Amy has been a guest speaker at Dr. Alan D’Andrea’s class at Harvard Medical School, where she shared her experiences and perspective as an FA patient with early-stage researchers. Amy is open about sharing her story, her knowledge about growing up with FA and how it impacts everyday life. Described as positive and spunky, Amy is looking forward to bringing her perspective of living with FA to help bridge connections between patients and scientists. Amy hopes to provide her personal insight for those who are dealing with FA to know that they and their families are not alone and can live happy lives with this diagnosis.
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I am a poet, a writer, and a storyteller. I’m also a student, and an older brother to a young man with FA and special needs. I’m a DACA recipient. I’m here. I’m present. I am more than my current mental state, and more than this diagnosis.
People with rare diseases like FA often rely on a combination of healthcare programs and insurance coverage. Any change that reduces access to care or increases out-of-pocket costs can have real-world consequences for our community.