5 years ago, this little boy got an answer
August 29, 2016
BENEFITING: ELLA JEWELL INC
The finish line is a cure for Neutropenia. The Long Race 4 Tate is not one day. It’s not a pledge per mile. A donation is a way to cheer on Tate and everyone with Neutropenia because it's for research for a cure and treatment options.
Please help Tate and 3,000 other children and adults with Neutropenia by making a tax deductible donation to “The Long Race 4 Tate,” a fundraiser for the Ella Jewell Foundation. EJF is the only nonprofit dedicated to raising money for Neutropenia research. The only U.S. based research for Neutropenia is at the University of Washington School of Medicine. There is one affiliated research project in Europe. EJF also raises money for the National Neutropenia Network - another 501(c)(3) charity, which provides patient support through connecting patients with resources, including the registry at the University of Washington, and a summer family conference with experts in the field.
Feel free to stop reading and make your donation if you are a returning donor who knows the story!
Never heard of Long Race 4 Tate/Neutropenia/Ella Jewell Foundation? You must be new! Thank you for wanting to learn more.
About Neutropenia. Neutropenia means the type of white blood cell that fights bacteria is missing. Since bacteria regulates our bodies, neutropenics can get infections from "good bacteria" too. There is no cure for this condition. There is only one treatment, a daily shot that was created for people undergoing chemotherapy. It was never intended for long-term use. Without treatment, illnesses can be life-threatening.
About the Ella Jewell Foundation. EJF was established as a nonprofit public charity shortly after Ella Jewell was diagnosed as a newborn in 2009. It is run by her parents as volunteers. EJF is the only nonprofit that raises money for research (at the University of Washington, which is the only research effort in the U.S. and is directly tied to the only international research effort. With only approximately 3,000 affected people in the world, Neutropenia is a very small community).
Funds raised by EJF (and this fundraiser) are primarily for research efforts. A pill to replace the current shot and an at-home blood test are two efforts underway.
A small portion of EJF proceeds also helps the National Neutropenia Network, which holds a family conference in the U.S. each summer. The conference allows adults to learn from experts about the condition and children to enjoy "camp" with other neutropenic children and their siblings. EJF’s contribution to helps the NNN provide “Kids Kamp” and reduce the costs for families that cannot otherwise afford to the travel expenses. Like EJF, NNN does not have a full-time staff and is an effort provided by people who have loved, and sadly lost, family to Neutropenia.
Please note that EJF does not raise money for individual medical expenses and neither does this fundraiser, Long Race 4 Tate.