International Fanconi Anemia Day is being celebrated as a way to increase awareness of this remarkable and life-threatening disease, and raise much-needed funds for research.

Fanconi anemia (FA) is a genetic disease that affects children and adults from all ethnic backgrounds all over the world. The disease is marked by a deletion of the gene that allows DNA to repair itself and manifests itself in the failure of a person’s bone marrow. Though its geographical reach is vast, the occurrence of the disease itself is rare. Approximately 1,000 persons worldwide currently suffer from the disease.

For such a rare disease, FA is acknowledged as a disease of pioneering “firsts” in both its treatment and research into possible cures. The world’s first successful umbilical cord transplant was performed on a child with Fanconi anemia in 1988, while the world’s first stem cell transplant from a “savior sibling” born using reproductive medicine and pre-implantation genetic diagnosis was used to save the life of another Fanconi patient. The latter occurred in 2000, and recipients of both transplants are alive today.

In 2002, Fanconi anemia garnered further international attention when an important discovery was made linking it to the BRCA breast cancer gene. Research into FA is of tremendous value to the world’s general population because of the unique and important insights it provides into other medical problems, like breast cancer, and all-too-common conditions including ovarian and pancreatic cancers, as well as leukemia. The promise of FA research includes predictive tests for these other illnesses, and the development of drugs and therapies that can prevent or alleviate not only FA but a variety of other maladies as well.

“It’s astonishing to consider that the research that is benefitting so many around the world has been fueled by a small core of incredibly motivated, industrious and creative Fanconi anemia families, said Dave Frohnmayer, founder of the FARF. “The family-driven International Fanconi Anemia Day is a terrific way to bring together all of this great energy for even more effective fund- and awareness-raising.”

The FA families and their communities have a host of events and fundraisers planned around International Fanconi Anemia Day including:

• Quiz Night, Raffle and Shave-a-thon, Skerries, Co Dublin (Ireland)
• Raffle, Chicago, Illinois (USA)
• Sale of Technical Equipment, Copenhagen (Denmark)
• Yard Sale, Portland, Oregon (USA)
• Kick for FA Karate Exhibition Boonsboro, Maryland (USA)
• Fun Run, Fete/Fair, Rock Concert & Disco (United Kingdom)
• Yard Sale and Car Wash, Honolulu, Hawaii (USA)
• The 10th Annual Ontario Fundraiser <www.curefanconi.org>, Vaughan, Ontario (Canada)
• Chess for FA Benefit Tournament, Corbett, Oregon (USA)
• Fight FA 50/50 Raffle, St. Louis, Missouri (USA)
• Feast for FA and Cheers to a Cure, St. Charles & St. Louis, Missouri (USA)
• Turtle Races, Carrollton, Kentucky (USA)
• Garage Sale and Ebay Auctions, Garden City, New York (USA)

About the Fanconi Anemia Research Fund

The Fanconi Anemia Research Fund, Inc. is a tax-exempt non-profit corporation dedicated to furthering scientific research on Fanconi anemia. Our mission is to find effective treatments and a cure for Fanconi anemia and to provide education and support services to affected families worldwide.

About Fanconi Hope

Fanconi Hope Charitable Trust is a UK organisation working closely with the Fanconi Anemia Research Fund providing support to families in the UK and Ireland, encouraging research and promoting awareness and understanding of Fanconi Anaemia among affected families, the medical profession, and the general public.

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