About the Fund
Lynn and Dave Frohnmayer started the Fanconi Anemia Research Fund, Inc. in 1989 to fund research into this disease and to provide support to affected families worldwide through medical referral, education, publications and annual family meetings. To this end, more than $35 million has been raised since the Funds inception.
In the area of research, donors to the Fund have seen their gifts multiply many fold. More than one hundred ten investigators have received support from the Fund for more than 220 research projects to study FA. Many of these researchers have gone on to receive major grants for FA research from the National Institutes of Health and other governmental and nationwide agencies. Grants from private foundations have helped us move FA science faster than ever thought possible.
In addition, the Fanconi Anemia Research Fund, Inc. produces a number of publications containing clinical, scientific and family support information. These publications are sent worldwide to thousands of researchers, physicians, and families.
The Fund convenes an annual International Fanconi Anemia Scientific Symposium at which researchers from around the world present the results of their research. In addition, the Fund sponsors a variety of smaller scientific meetings, gathering researchers together to discuss such topics as: bone marrow transplants, cytogenetics, squamous cell carcinoma and acute myelogenous leukemia. In April 2008, the Fund held a Clinical Care Conference which resulted in the publication of Fanconi Anemia: Guidelines for Diagnosis and Management (2008).
For families, the Fund holds an Annual Family Meeting, which is also a recreational camp for parents and children. Besides the networking and recreation aspects of the family meeting, physicians and researchers present research and treatment updates to parents during a three and one-half day conference. This meeting is invaluable to children who can meet with other FA youngsters in a fun and activity-filled environment, for parents who can relax with other FA parents and have an opportunity to talk directly with FA experts, and for those experts to have an opportunity to talk with FA families. In addition, the Fund holds smaller regional meetings throughout the year, bringing FA families together with physicians and researchers to hear about treatment and research updates and to have an opportunity to network with one another.
In addition to the Annual Family Meeting, the Fund also provides ongoing telephone, letter and e-mail support to families affected by FA worldwide.