About

The Coalition was founded in 1990 by Joyce and John Taylor when their son was diagnosed with moderate/severe Hemophilia B. Formed as a way of providing information about treatment options to patients and their families, as well as instigating and funding research and product development, the Coalition provides information about treatment that will improve quality of life, works to define new treatment modalities, and support efforts to eliminate the disease.

The Coalition is guided by a board composed of researchers, doctors, lawyers, parents and patients. The outreach to the medical community is handled through a small Scientific Advisory Board. The Coalition is supported by a gift from Joyce and John Taylor and accepts gifts from corporate and individual donors. The commitment of the Coalition is to continue to instigate and support scientific research, product development, patient information and advocacy is ongoing.

Over the years it became clear there were many concerns and questions that parents of young children diagnosed with Hemophilia B have that remained unanswered. While there has always been information available through physicians, treatment centers and support groups, it is apparent that many concerns and anxieties remained. In 2001, the Taylors’ son John, then 13, decided to launch a site designed to specifically address these concerns. As one of the first children in the country to receive prophylactic treatment, John is uniquely qualified to act as an advocate for its use. Since prophylaxis, John has never had a “bleed”. Prophylaxis has allowed him to live an active life as a basketball player and an active member of his school. John believes it is important to share his information and experience “Ask John” has proved an invaluable resource for families, empowering them and their children to live active an productive lives. Questions should be directed to the Coalition and will immediately be forwarded to John.

Many of the day to day operations of the Coalition are handled by Kim Phelan, For more information please contact Kim