The Family Retreat offers families a break from appointments, treatment decisions and everyday responsibilities. Children can try new activities and grow in confidence while caregivers learn, share practical support and connect with one another. The relationships formed at camp often continue long after everyone goes home.
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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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