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LONG RACE 4 TATE: BENEFITTING ELLA JEWELL FOUNDATION
MISSION OF THE ELLA JEWELL FOUNDATION
"Raise awareness in the area of Neutropenia and funds to put toward research for Neutropenia and Childhood Bone Marrow Failure Disorders; to one day find a cure and make a difference."
Neutropenia is a very rare blood condition that causes a reduced number or complete lack of neutrophils (the bacteria-fighting white blood cell). EJF supports the University of Washington in studying how genetic mutations cause Neutropenia, severe infections and predispose to Leukemia. The University of Washington currently has laboratory evidence suggesting a new and alternative therapy to the only current treatment: GCS-F (brand name Neupogen), which is not intended for long-term use. Not all Neutropenics respond to treatment and are at severe risk of bacterial infection. Those who do respond tend to suffer from bone pain.
There is no cure for Neutropenia other than a bone marrow transplant, which carries its own risks.
STORIES OF NEUTROPENIA
ELLA JEWELL was born on September 2nd, 2009 with a rare blood disorder, Severe Congenital Neutropenia. Ella’s family feels fortunate because Ella is doing well and responding well to daily GCS-F treatments. Ella’s family wants to share their story and the stories of other families in hope to raise awareness and funds for research and to one day find a cure.
