Winn/Byrd Award for Adults with FA
The Fanconi Cancer Foundation 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 FCF 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 FCF board member, Tracy Strimling. The committee understands 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 FCF, to be used to fund the award and associated costs.
Could You Be the Next Recipient?
Awards are given to one-two individuals who 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 Minneapolis, Minnesota in September 2025.
More Information:
- You must be at least 17 years old as of the award deadline
- Deadline is July 2025
- Your application will address the following:
- Tell us how you are working to make a difference in your community.
- Tell us about your goals. Are they a stretch for you based upon where you are now, not in comparison to someone else?
- Tell us how you demonstrate leadership in your own way.
- Describe how you would use the award.
2025 Applications will open in Spring 2025.
2024 Recipients
First Place Recipient
Katherine De Los Santos
Katherine was diagnosed with FA as a child and faced bone marrow failure at age eight but recovered after a successful transplant. She went on to earn a degree in Biology and Chemistry, work as a medical assistant, and volunteer with Be The Match and The Icla da Silva Foundation. While pursuing her dream of attending medical school, Katherine was diagnosed with esophageal cancer through the FA Cancer Screening Study at the NIH. Despite this challenge, her resilience and passion for healthcare remain strong. Now in recovery, Katherine is preparing to apply to medical school, with a mission to serve children in underserved rural communities. We are proud to honor her with the 2024 Winn/Byrd Award, recognizing her determination and impact on healthcare!
Katherine accepting the award from FCF CEO Isis Sroka and 2023 Recipient, Ana Tabar
Second Place Recipient
Robin Lewis
This year, the committee honors Robin Lewis who has made remarkable progress, alongside his wife, in establishing Matches on the Map. Through this initiative, they have traveled across South Africa, recruiting bone marrow donors and raising awareness about the need for lifesaving matches. Robin’s goal is to sign up 1,000 potential donors each year while creating sustainable recruitment efforts at universities and schools that will continue long after their journey. Additionally, they are integrating FA support groups within South Africa as they continue to grow their educational talks and recruitment drives. We eagerly anticipate seeing the lives they will touch. Congratulations, Robin!
Past Award Recipients
Ana Tabar
Ana, who grew up in the Dominican Republic, founded Un Corazón por Fanconi in 2018 to address critical needs for medication, diagnosis, treatment, and education for those with FA there. Through this organization, she facilitates a supportive WhatsApp group for over 73 families affected by FA across 12 Latin American countries. While serving on FCF’s Adult Council from 2020 to 2022, she helped plan two meetings for adults with FA—prioritizing international perspectives—and participated in the FCF diversity, equity, and inclusion committee. A recipient of two FA international grant awards, Ana represents the Latin American FA community at the annual International Summit. Her leadership in the Spanish-speaking FA community and efforts to educate doctors in the Dominican Republic exemplify the spirit of the Amy Winn and Christopher T. Byrd Award for Adults with FA. Thank you, Ana!
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!
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.
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”.
