Our only child, Marina, is a lovely, sweet girl who loves going to the beach and riding bicycles (especially at her grandparents’ farm). She is 11 years old and we are so thankful she is doing well. Just after her...
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Caregiver Position Description Position Summary: The Caregiver cares for the patient’s medical, physical, emotional, spiritual, mental, social-emotional, financial, organizational, and dietary needs. Reporting to: This position reports to the patient, medical staff, the patient’s mother, other family members, friends, acquaintances, and the...
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Every summer, families affected by FA from come together at Camp Sunshine in Casco, Maine for five days. The Family Meeting (or Family Camp) is a special event that allows families to hear from expert FA researchers and physicians, to attend support...
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Introduction My subject was born an orphan in 1927. With no known relatives and no connections to a wider community, what followed were 60 years of abandonment. In 1985, one courageous family decided that this isolation had gone on long...
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FA Day Brings Families Together to Make an Impact May 1 is International Fanconi Anemia Day, a day This year, 30 FA families and community members held fundraisers throughout the United States, with two in the Dominican Republic and Oman!...
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Hundreds of runners, walkers, volunteers, family and friends gathered in Hilton, NY for the 4th annual 5K for FA on May 5. The run/walk is held in honor of 13-year-old Eli Lana, who has FA. Each year, the event has...
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