Originally published February 28, 2021 on The Negative Space My husband is one of the 30 million Americans living with a rare disease. Fanconi anemia (FA) has no color recognizable by the general public. You can’t buy cereal or water bottles...
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Right after his transplant, and before Joel was discharged from MSKCC, we received the news that he had another condition called myeloproliferative neoplasm (MPN). At that time, we weren’t worried about it. We were just so overwhelmed by the love...
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Tara Cleary Eternal hope. Of all the characteristics that Fanconi anemia (FA) may or may not bring out in any of us, this is the one that will help us the most. We must always believe medical answers are right...
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Zach’s mom recently shared: “FARF has been a big player in saving Zach’s life this year. Yes, it really is that simple. FARF has helped us find doctors and proper treatment plans every step of the way.” FARF Executive Director
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In 2018, we managed to attend the German Fanconi Family Meeting. It was nice to meet FAmilies and find answers to many of our questions. In Germany, it was confirmed that Omar needed a bone marrow transplant as soon as...
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Congratulations to Maria Isabel Rodríguez Ribero! Maria is a mother, English teacher, master’s student, and community volunteer who lives in San Gil, Colombia. Now 33 years old, Maria was diagnosed at age 11. As a teenager, Maria remembers not understanding...
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