Czechowicz lab at Stanford Promising research needs continued support to answer the next question. A laboratory finding may need testing in more models. A screening study may need years of follow-up. An approach ready for a clinical study needs the...
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Allie Jones
Allie M. Jones, an individual with Fanconi Anemia from Iowa, lives life to her fullest potential. She was the first person in the world with FA to survive two bone marrow transplants in 1996, later becoming the subject of a Cornell University study. Nearly 30 years later, Allie continues to thrive by sharing her story and inspiring others to live fully. She has spoken twice for Rocket Pharmaceuticals, including at the Empire State Building and Carnegie Hall for Rare Disease Day.
Allie is the owner of Soul Companion Services, where she works as a Soul Doula with training in both Birth and Death Doula fields. She also hosted a grief group for FA parents within our community. Beyond her business, Allie works two part‑time jobs—as a Job Coach for adults with Autism and at a funeral home. She fills the rest of her life with the gym, volunteer work, art, loved ones, and her beloved Vizsla, Motley Roo.
Allie Jones
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How can we prevent cancer in people with FA? How can treatments become safer? At the 2026 FA Scientific Symposium in Phoenix, researchers shared progress toward answering these questions, alongside work to protect blood-forming cells and better understand the broader effects of FA. Some approaches are entering clinical studies. Others are helping researchers decide which ideas deserve further testing.
More than four decades ago, Lynn Frohnmayer was a mother searching for answers after learning that three of her five children had Fanconi anemia. There was no roadmap and no established network of families or experts. Information was scarce, treatments were limited, and the future her family had been given was devastating.