BENEFITING: FANCONI ANEMIA RESEARCH FUND INC
EVENT DATE: Oct 08, 2017
Harmony Leiran wrote -
Last year I ran the Chicago Marathon and I did not run for a charity. As I was training, I kept thinking to myself how different it would be if I was running for a purpose. There are so many charities that sponsor runners that are worthwhile, but I wanted to be able to run for a cause that is near and dear to my heart. I was lucky enough to meet my friend's son, Jacob, 10 years ago when I started my new job. Jacob has Fanconi Anemia (FA), which is a rare genetic disorder that is primarily a blood disease, but may affect all systems of the body. Most FA patients develop bone marrow failure and require a stem cell transplant. Jacob is the definition of a fighter, so I knew that running to raise money for Fanconi Anemia was what I wanted to do! I am hoping to spread awareness and raise money for the Fanconi Anemia Research Fund in honor of Jacob. Lynn and Dave Frohnmayer started the Fanconi Anemia Research Fund, Inc. (FARF), in 1989, to find effective treatments and a cure for Fanconi anemia and to provide education and support services to affected families worldwide. Support includes: medical resource information, education, publications, online support groups, annual family meetings, and meetings for adults with FA. • The Fund has awarded more than $18 million to fund over 210 research grants. • FARF-supported research has made significant improvements in the bone-marrow transplant survival rates of FA patients. • Research funded by FARF has helped to uncover important information about cancers that affect both FA and non-FA patients. • More than 95% of the Fanconi Anemia Research Fund’s annual budget comes from family fundraisers.