Fight for Phoebe, Inc is a 501(c)(3) non-profit organization dedicated to helping local people and families with hemophagocytic lymphohistiocytosis (HLH) and other orphan diseases through:
Advocacy: Providing financial assistance through local providers and help families understand the diagnosis, treatment options, insuring that they and care providers understand their rights as patients.
Education: Increasing community awareness of the disease and treatments, to include bone marrow transplantation, especially for minorities.
Research: Work with national groups to advance research into histio diseases.
We founded Fight for Phoebe in memory of Phoebe Jeong-Hui Ward. Phoebe was 8 years old when she was diagnosed with HLH (Hemophagocytic Lymphohistiocytosis), a rare and life threatening auto immune disorder.
Before becoming ill, Phoebe was an active and vibrant girl who loved her dog Baci, Tae Kwon Do, basketball, lacrosse, cheerleading, and having fun.
Phoebe passed away from HLH in February 2016 after more than 5 months in the hospital. Her final days were at home with her family.
Each year, Fight For Phoebe puts on a memorial run in September, which also happens to be Histio awareness month. Proceeds are donated to a histio-related research organizations including Cincinnati Children's Hospital, the HLH center of excellence.
In addition, we fundraise on or near Phoebe's birthday (December 7th) with proceeds going to Hospice of the Chesapeake's Chesapeake Kids program.