News

My Joel

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...

Read More >

Our Journey with FA and Brain Lesions

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...

Read More >

How You’re Making a Difference: Zach’s Story

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

Read More >

A Ninja from the Desert

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...

Read More >

2020 Recipient of the Winn/Byrd Award: Maria Isabel Rodríguez Ribero

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...

Read More >

A diagnosis of FA amidst a global pandemic

In hindsight, while I wouldn’t wish the way we found out about Elliott’s condition on anyone, it gave us time to reflect and be prepared to fight for Elliott. Included in the test results was a link to the Fanconi...

Read More >