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Fanconi Anemia Research Fund

About Coley's Cause

Coley & KitColey’s Cause Charitable Trust Foundation is a 501 (c) (3) registered non-profit organization.  Established in 2005 in honor of Nicole “Coley” Levine, the primary objectives of the foundation are to:

  • Raise desperately needed funds for the Fanconi Anemia Research Fund (FARF).  As an orphan disease, FARF serves as the single source of funding for issuing critical research grants in support of learning more about the genetic pathway of FA and refining treatment protocols.
  • Increase awareness of Fanconi Anemia and the devastating impact on the lives of afflicted children and their families.
  • Provide an annual scholarship to a graduate of Bridgewater-Raynham High School who wishes to continue their education in the “diverse” medical field
  • Provide financial assistance to local families in need due to medical circumstances such as cancer or other debilitating diseases.

Coley, Travis &  Marissa - Spring 04Thanks to the tremendous outpouring of support from our friends, family, and local community as well as all the hard work from our volunteers, the tournament has been a resounding success over the last eight years.  As a result, Coley’s Cause has been able to donate $205,000 to the Fanconi Anemia Research Fund!

Driven by our everlasting memory and love for Nicole, we are determined to continue our annual fundraising efforts in order to facilitate the future research efforts of the many dedicated physicians and scientists working on behalf of these unfortunate children.

Your charitable donation to Coley’s Cause is tax deductible. Our tax ID# is
55-6173693.

More About Fanconi Anemia

Fanconi anemia (FA) is one of the inherited anemias that leads to bone marrow failure (aplastic anemia). It is a recessive disorder: if both parents carry a defect (mutation) in the same FA gene, each of their children has a 25% chance of inheriting the defective gene from both parents. When this happens, the child will have FA.

When Coley’s Foundation was established, there were at least eleven FA genes (A, B, C, D1 (BRCA2), D2, E, F, G, I, J, and L). Now 15 genes have been discovered, adding genes  M,N, P and RAD51C. These 15 genes account for 95% of Fanconi Anemia “cases”.  Mutations in FA-A, FA-C, and FA-G are the most common and account for approximately 85% of the FA patients worldwide. FA-D1, FA-D2, FA-E, FA-F, and FA-L  account for 10%. FA-B, FA-I, FA-J, FA-M, FA-N, FA-P and FA-RAD51C  represent less than 5% of FA patients. Eight of the Fanconi anemia genes have been cloned.

FA occurs equally in males and females. It is found in all ethnic groups. Though considered primarily a blood disease, it can affect all systems of the body. Many patients eventually develop acute myelogenous leukemia (AML) and at a very early age. FA patients are extremely likely to develop head and neck, gynecological, and/or gastrointestinal squamous cell carcinomas, again at a much earlier age than in squamous cell carcinoma patients in the general population. Patients who have had a successful bone marrow transplant and, thus, are “cured” of the blood problem associated with FA still must have regular examinations to watch for signs of many other cancers or a relapse of bone marrow failure.

How is it Diagnosed?

Fanconi anemia usually reveals itself before children are 12 years old, but in rare cases no symptoms are present until adulthood. Fanconi anemia patients are usually smaller than average. They may feel extreme fatigue and have frequent infections. Nosebleeds or easy bruising may be a first sign of the disease. Blood tests may reveal a low white cell, red cell or platelet count or other abnormalities. Sometimes myelodysplasia, AML, or squamous cell carcinoma in a young adult is the first sign of FA.

Physical Defects

FA sometimes is evident at birth through a variety of physical defects. These may include any of the following:

  • Hand and arm anomalies: misshapen, missing or extra thumbs or an incompletely developed or missing radius (one of the arm bones).
  • Skeletal anomalies of the hips, spine, or ribs.
  • Kidney problems, including missing or horseshoe kidney.
  • Skin discoloration (café-au-lait spots); portions of the body may have a suntanned look.
  • Small head or eyes.
  • Mental retardation or learning disabilities.
  • Low birth weight.
  • Gastrointestinal difficulties.
  • Small reproductive organs in males.
  • Defects in tissues separating chambers of the heart.

Relationship to Cancer

People with Fanconi anemia often develop leukemia and other cancers. In fact, Fanconi anemia patients are at much greater risk of developing acute myelogenous leukemia (AML) than people without Fanconi anemia.

Leukemia

Leukemia is a malignancy of the blood system in which the bone marrow produces vast quantities of immature white cells called "blasts." The blasts can proliferate rapidly and suppress the development of healthy blood cells needed for effective functioning of the patient's body. If untreated, leukemia results in uncontrollable infections and bleeding, and death. The type of leukemia that FA patients are likely to develop, AML, is a particularly aggressive type, usually found in older people. AML is difficult to treat successfully, especially in FA patients, who are very sensitive to the toxic drugs used to suppress the leukemia.

Other Cancers

Fanconi anemia patients have an extremely high risk of developing squamous cell cancers in areas of the body in which cells normally reproduce rapidly, such as the mouth, esophagus, the intestinal and urinary tracts, the anus and the reproductive organs. FA patients may develop these cancers at a much earlier age than people without Fanconi anemia. Patients who have had a successful bone marrow transplant and, thus, are cured of the blood problems associated with FA, still must have regular examinations to watch for signs of cancer.

Success is Seen

Over the past 9 years new genes have been discovered that not only help pathways to cure FA but other cancers that affect these patients and all of us. The current life expectancy is 29 years old but patients are now living through their 30’s, 40’s and 50’s. From your donations and support, new genes are expected to be discovered, bone marrow transplants success rates are increasing and cancer cures are advancing!

For more information about Fanconi Anemia and the courageous children struggling with this disease, please visit www.fanconi.org.

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