Fanconi Anemia Research Fund
Lynn and David Frohnmayer founded the Fanconi Anemia Research Fund (FARF) in 1989 to find effective treatments and a cure for Fanconi anemia (FA) and to provide education and support services to affected families worldwide. Since 1989, the Fund has raised over $35 million, promoting cooperation between scientists, physicians, institutions, other funding organizations, other support groups, and private industry to promote cutting-edge scientific research that has dramatically increased the lifespans of people with FA.
Fanconi anemia is an inherited DNA repair disorder that can lead to bone marrow failure and cancer. Originally considered primarily a blood disease, we now know that FA affects all the cells in the body. It is a complex and chronic disorder that is psychologically demanding. FA is also a cancer-prone disease, affecting individuals decades earlier than in the general population. FARF is leading the quest to find effective treatments for these cancers as well as effective genetic interventions, so that one day Fanconi anemia will be a treatable condition that is not life-threatening.
The Fund furthers its mission through:
The Fanconi Anemia Research Fund has sponsored 225 research grants to 148 investigators worldwide. Donors to the Fund have seen their gifts multiply exponentially. Pilot grants from the Fund have enabled many FA researchers to garner major grants for FA research from the National Institutes of Health and other funding sources worldwide. Donations to FARF have helped to advance FA science more rapidly than ever thought possible.
FARF convenes an annual Fanconi Anemia Scientific Symposium, where hundreds of researchers from around the world share discoveries, consider possibilities for clinical applications, and pose questions for further study. In addition, the Fund sponsors a variety of smaller, highly specialized scientific meetings, gathering researchers together to focus on topics including bone marrow transplantation, head and neck cancer, gene therapy, cytogenetics, small molecules as possible therapies, and acute myelogenous leukemia (AML).
The Fund holds an Annual Family Meeting, which is also a recreational camp where children play while their parents attend presentations by scientists and physicians regarding the latest research and treatments. The family meeting is invaluable for youngsters to meet others with FA and for parents to bond, share stories, and connect with medical experts. The Fund also provides ongoing support to FA families worldwide by telephone, letter, and e-mail.
FARF publishes many educational materials, including a clinical care book (Fanconi Anemia: Guidelines for Diagnosis and Management), the FA Family Newsletter, and the International Fanconi Anemia Treatment and Testing Resource Guide. The Fund’s educational materials are sent worldwide to thousands of researchers, physicians, and families.
To learn more about the Fanconi Anemia Research Fund, click here.
Philanthropy Director Position
Reporting to the Executive Director, the Philanthropy Director serves as the front line officer to promote the Fanconi Anemia Research Fund’s fundraising priorities. Until now, these priorities have been established and met by FA families, especially the Frohnmayers, who have created a strong financial foundation for the future. This newly created position gives the Philanthropy Director a unique opportunity to build on past success while creating a diversified development strategy and program for the future.
Specifically, the Philanthropy Director will strengthen the family fundraising program already in place and develop and sustain a robust annual giving program. The Director identifies, qualifies, cultivates, and solicits prospects to meet and exceed budgetary goals, interacts with high-level donors, investigates new grant opportunities, and implements a multi-year marketing plan for planned gifts. The Philanthropy Director coordinates with and receives support from a team of colleagues including the Development Coordinator, Communications Director, Family Services Director, Scientific Director, and Executive Director.
- Create and execute a diversified and sustainable development strategy with emphasis on individual donors and major gifts, family events, corporate support, planned giving, industry partnerships, and grants.
- Develop and maintain positive relationships with the FARF staff, Board of Directors, Philanthropy Council, Scientific Advisory Board, and FA families nurturing an environment of teamwork, excellence, and shared success.
- Lead a vibrant and productive Philanthropy Council. Provide sound advice to shape and refine goals and evaluate in accordance with the development strategy.
- Partner with the Communications Director to develop a donor-centered communications plan.
- Collaborate with the Scientific Director and Family Services Director to create informative, persuasive oral and written narratives to increase awareness of the Fanconi Anemia Research Fund, support key programs and projects, and effectively match the interests of prospective donors with the Fund’s needs.
- Partner with FARF staff to engage and interact with FA families in support of their fundraising efforts. Work to expand the number of families raising money, increase the amount of funds they raise, and grow participation in FA Day.
- Collaborate with colleagues to expand the Fund’s international reach. Engage key leaders and FA communities in establishing and supporting fundraising efforts with a long-term goal of increasing the global donor base.
The Fanconi Anemia Research Fund seeks a tenacious Philanthropy Director committed to growing and expanding the Fund’s development efforts. The ideal candidate is dedicated to the Fund’s mission to find effective treatments and a cure for Fanconi anemia and to provide education and support services to affected families worldwide. The Director understands the vital impact successful fundraising has on FA families and brings a high degree of empathy, compassion, and responsiveness to working with families affected by Fanconi anemia.
The Philanthropy Director brings prior experience creating and executing a development strategy, including establishing systems, evaluating pipeline strength, and building out strategies to reach new donors. The ideal candidate is comfortable with high net worth donors and successfully cultivates partnerships and relationships while providing a personal touch. An excellent communicator, the Director pays close attention to detail and easily translates complex topics and scientific research into compelling stories.
The Philanthropy Director enjoys a close-knit, supportive, fun-loving team that depends on each other to accomplish their respective tasks. The successful candidate embraces a team that celebrates milestones, nurtures change, and embodies flexibility.
This position requires a Bachelor’s Degree and a minimum of five years professional fundraising experience. A strong understanding of professional fundraising best practices is required, as is expertise with pipeline strategy, feasibility forecasting, annual giving, and prospect management. Experience with major gift fundraising, involving prospect identification, cultivation, and solicitation is essential. Outstanding oral and written communication skills are essential. Prior experience in or knowledge of the fields of health, science, or medical research is desired.
City of Eugene
Located in the Willamette Valley with the Willamette River running through the heart of the town, Eugene is Oregon's second largest city. Its 168,000 residents are diverse, friendly, and outgoing. Its slogan, “A Great City for the Arts and Outdoors” reflects Eugene’s sense of balance between stimulating arts organizations and wonders of nature. The City’s support of the arts includes festivals, museums, galleries, ensembles of all kinds, and a variety of world-class performing venues. Its love of the outdoors is embodied in miles of biking, running, and hiking trails and easy access to both the ocean and ski slopes. The Eugene Airport is only twenty minutes from downtown, and Amtrak rolls right into the city center.
Home to the University of Oregon, Eugene is also a robust college town, offering a high percentage of professionals and academic opportunities. Known as TrackTown USA, this outdoors-minded and health-consciousness community has produced many Olympic athletes, a Heisman trophy winner, the innovative Nike mega-company, landmark sports venues, and a host of sporting events from popular football games and marathons to five U.S. Olympic Team Trials for Track & Field.