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. 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 challenges of FA.
This award was created by the FARF board of directors to honor Chris and Amy’s roles as leaders on the board. The board felt it important to recognize the importance of 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, his sister, Courtney Swafford; Amy’s mother, Lynn Frohnmayer; Amy’s husband, Alex Winn; the previous year’s recipient, and FARF board member, Aileen Carlos. The committee expects that individuals will stretch themselves in differing ways and will be looking at applications with this in mind, rather than with 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 an appropriate percentage of the fair market value of the endowment to FARF, to be used to fund the award and associated costs.
Awards are given to two individuals, who like Chris and Amy, are striving to make a difference and have set high goals for themselves. Does this sound like you? A $4,000 first place award will be given, and a second award of merit for $1,000 may be granted at the discretion of the award committee. Would this award help you reach your goals?
The awardee(s) will be announced at the FA Adult Meeting in Vancouver, Canada (September 27th-October 1st, 2023). The first-place awardee is encouraged to receive the award during the banquet dinner and present a short speech either in-person or virtually (if unable to attend in-person). If giving a speech in-person, FARF will cover airfare costs for the first place awardee.
2024 Applications will be available in Spring 2024 (summer deadline).
Ana grew up in the Dominican Republic, and in response to the critical needs for access to medication, diagnosis, treatment, and education for those with FA there, she established Un Corazon por Fanconi in 2018.Through this organization, she facilitates a supportive WhatsApp group for more than 73 families impacted by FA from 12 countries in Latin America.
While serving on FARF’s Adult Council from 2020-2022, Ana helped plan and execute two meetings for Adults with FA (while keeping the international voice at the forefront of planning) and participated on the FARF diversity, equity, and inclusion committee. In addition, she is the recipient of two FA international grant awards, and acts as a representative for the Latin American FA community at the annual International Summit.
Ana’s leadership in the Spanish-speaking FA community, as well as her efforts to educate more doctors about FA in the Dominican Republic, exemplify the spirit of the Amy Winn and Christopher T. Byrd Award for Adults with FA. Thank you, Ana!
This year, the committee had multiple outstanding candidates for the award. Therefore, they have decided to recognize a second place winner, Egil Dennerline.
Egil was diagnosed at age 16 and now describes himself as one of the “old guys” with FA at age 49. He is a musician, writer, a husband, a father, and friend to many. He also serves on the FA Adult Council, bringing an international and more mature perspective to the group. Congratulations, Egil!
2022: Henry Fenyo. Henry is a college student at St. John’s University in Queens, New York. He plans to earn a degree in Special Education with a minor in social justice. More specifically, he will be part of a program that helps students examine systems that cause poverty and teaches them to be proactive in advancing social justice. Henry aspires to be a lawyer who advocates for children with disabilities. As someone living with Fanconi anemia, he knows the challenges and sometimes isolating experiences that come with a rare disease. It was his own experiences that have shaped into someone that wants to fight for others because everyone deserves justice and fairness.
2021: Robin Lewis. Robin was born in Pretoria, South Africa and was diagnosed with FA at age 25. Robin believes that FA has given him a new chance at a life filled with a positive outlook on his goals, attitude, perspective, and the planet. Robin and his wife, Jolandie, started Numinous Expeditions in 2017, a nonprofit that carries out environmental, humanitarian, and animal welfare projects with a focus on ethical solutions and long-term outlooks. Their goal is to visit as many countries on the African continent as possible in their home-built expedition truck “Betsy”. Read more about Robin and see his acceptance speech here.
2021 Honorary Recipient: Alexandra Pearl. Alexandra has worked to make a difference in her community for years, through fundraising, promoting bone marrow donation, and encouraging younger people with FA to excel. She’s demonstrated leadership through volunteering with FARF and the National Ability Center. Alexandra now runs her own business creating beautiful handmade pens. With each sale, she raises awareness of FA and donates a portion of sales to FARF. Alexandra plans to use the award to help build her dream shed, full of tools that are actually made for her hands.
2020: Maria Isabel Rodríguez Ribero. Maria is a mother, English teacher, master’s student, and community volunteer who lives in San Gil, Colombia. When she was diagnosed with FA at age 11, these was very little information available about the disease in Spanish, so Maria taught herself English and became her own advocate. This unlocked a new world of information and connection. She currently teaches English and mentors her students to overcome seemingly insurmountable obstacles. Read more about Maria and watch her acceptance speech here.
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 was 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 began a PhD program in microbiology, immunology, and cancer biology at the University of Minnesota. Watch her acceptance speech here.
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.