The Fanconi Anemia Research Fund honors the inspirational lives of two beloved former board members with the Amy (Frohnmayer) Winn and Christopher T. Byrd Award for Adults with Fanconi Anemia (FA), aged 17 or older.
Chris and Amy set high goals, devoted their time and energy to making a positive difference, and lived their lives enthusiastically in spite of the challenge of FA.
This $5,000 award is given annually to someone who, like Chris and Amy, is striving to make a difference and has set high goals for him/herself. Does this sound like you? Would this award help you reach your goals?
The award recipient is usually announced at the Meeting for Adults with FA in September. The recipient is encouraged to receive the award in person at the meeting, and their travel expenses will be covered. If the recipient is not attending the meeting, they may be asked to video conference into the meeting for the announcement.
This award was created by the board of directors to honor Chris and Amy’s roles as leaders on the FARF board. The board felt it important to recognize that leadership by creating an award in their names that would encourage others to demonstrate leadership in their own way. The award committee is made up of Chris’ mother, Peggy McDaniel, Chris’ sister, Courtney Swafford, Amy’s mother, Lynn Frohnmayer, Amy’s husband, Alex Winn, last year’s winner, Jack Timperley, as well as FARF board member, Rachel Altmann. The committee knows that individuals will stretch themselves in differing ways and will be looking at applications with this in mind, rather than a preconceived notion about what leadership looks like.
In 2018 the Amy Winn and Christopher Byrd Award Endowment Fund was created at the Oregon Community Foundation (OCF) through individual gifts from donors. Annually, OCF distributes to FARF an appropriate percentage of the fair market value of the endowment to be used to fund the award and associated costs.
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 why her parents kept her inside of a bubble and away from the outside world. “I wanted to know about what made me different from my classmates and friends. There was very little information about Fanconi anemia (FA) available in Spanish. The information I did find was in English. So, what did I do? I learned English on my own.”
After taking the initiative to teach herself a new language, Maria discovered a new world of possibilities. By understanding more about FA, she could educate her doctors and get better care. Not only could she advocate for her own health, Maria was also able to connect with other people like her for the first time. She met Chris Byrd and Amy Winn at a Meeting for Adults with FA organized by the Fanconi Anemia Research Fund (FARF). Maria describes Chris and Amy as “beautiful souls” who helped her feel normal for the first time and who inspired her to make plans and set goals for her life.
This is a life lesson she now embodies in her work as a teacher and leader in the community. “When I was little, I was told I would die young, so I was not motivated to think about my future. I wanted to be a hematologist, but my doctors told me it wouldn’t be safe to work around sick people. So, I changed direction. I got my business administration degree and I became a mother.” She strives to teach her students that a seemingly insurmountable problem may sometimes present the best opportunity to learn. Maria encourages her students to see beyond today’s obstacles and look toward their goals. She is driven by her purpose to be of service to others, to be a better mother and citizen.
2019: Jack Timperley. Jack is a student of philosophy and business administration who hopes to start his own research and technology company one day. He’s an experienced public speaker who encourages audiences to think about their purpose, the value of connection, and the importance of perseverance in the face of adversity. Watch his acceptance speech here.
2018: Angela Bedoya. Angela is a young researcher who developed an interest in science during her bone marrow transplant as a teenager. After completing her degree in biomedical engineering, Angela
2017: Matthew Pearl. Matt is a motivated and inspiring young leader who has embraced the challenges of FA and turned them into lessons to guide his life positively and meaningfully. Watch Matt’s submission video here.