In the late 1940s Dorothy Watts White, RN worked as a nursing supervisor in pediatrics at Rochester General Hospital. One winter evening, Dorthea Golemb came in with her young son, who had been stuck, unsuccessfully, multiple times. Dorothy White started an IV for transfusion with just one stick. The two women bonded immediately.
Ultimately, Dorothy White and Dorothea Golemb organized 12 families into a support group, which evolved into the Rochester Chapter of the National Hemophilia Foundation. The group was officially Chartered by NHF in 1953 – one of the first NHF Chapters outside of New York City – for the purpose of providing advocacy, support and assistance to people affected by hemophilia. For several years, Dorothy White and Mary Gooley treated people who needed their help ("behind a curtain" - it was not a recongized program) at Rochester General Hospital. In 1959 the members of the Chapter board – acting in their own enlightened self-interest - asked Mary Gooley to establish a treatment center to care for them and their children.
Determined and resourceful, Mary Gooley worked tirelessly for those she served. She kept plasma at the hospital and in her home freezer so she could treat people in their homes in the middle of the night and on weekends. She enlisted and trained high-school volunteers to bleed donors and spin cryoprecipitate. She dealt with doctors, administrators, Blue Cross, Red Cross, employers, schools and families in need. Rochester’s Hemophilia Center became a specialty outpatient clinic offering comprehensive care for the diagnosis and treatment of people with hemophilia and related bleeding disorders. At its founding, it was one of two such centers in the country and the first to be organized as a free-standing clinic. Under Mary’s leadership, the Center was a pioneer in hemophilia care, providing comprehensive services to families affected by hemophilia using a robust, team approach to address needs of each patient as an individual.
The list of people who helped Mary is long indeed, including names both familiar and unfamiliar, locally and nationally. Any list would be incomplete without including George Miller, who ran the Center’s lab and touched the lives of countless families. The same is true of Sally Day, RN, NP, the Center’s first nurse and the first hemophilia Nurse Practitioner in New York State. Ditto for Agnes Merkel, Mary’s assistant and the Center’s first employee. The list goes on and on. Since its founding, the hemophilia center in Rochester has provided services in a compassionate, caring manner to all in need. It has advocated for affected individuals and for the larger bleeding disorders community, has strived to educate the healthcare community and the public about bleeding and blood-related disorders and has participated in forward-looking clinical research.
The Center continued to grow and change with the times, often leading the way with the newest products and treatments for patients. There were medical and scientific advances throughout the 1960s and 1970s. Then came disaster. Because manufactured clotting factor products were contaminated by the nation's tainted blood supply, HIV and Hepatitis threatened to wipe out an entire generation of patients with hemophilia. With the onset of AIDS came indescribable human tragedy and suffering. Hepatitis infected even more people, moving insidiously, with grave consequences.
The Center faced an organizational challenge of how it would remain viable to provide comprehensive hemophilia care if it lost a large number of patients. How could the Center ensure care for those with hemophilia whether or not they had contracted infectious diseases? After careful study and consideration, the board of directors recommended expanding the Center's mission by widening its potential base of support, both with clinical services and via fundraising. This could help the Center remain solvent and to continue meeting the needs of patients.
Mary Gooley served as the Center's first executive director from 1959 through her retirement in 1986. Her successor, Joyce Strazzabosco, served 13 years, through the darkest hours in our history. The Center’s current leader, Bob Fox, began his tenure in 2000. Over many decades, our Center has remained at the forefront of hemophilia care. Decades ago, Mary Gooley and Center staff helped establish programs in Buffalo, Syracuse, the Southern Tier, Albany and elsewhere in the country. Patients and staff successfully lobbied for federal funding for comprehensive hemophilia care, which helped to spread the Treatment Center model. Mary travelled the country, assisting other communities seeking to establish what Mary had created in Rochester.
Today, the Center provides education, treatment, research, advocacy and supportive programs to individuals and families affected by various inherited disorders, including disorders related to hemostasis (blood clotting), iron overload and a rare enzyme deficiency called Gaucher's Disease. We strive to enhance our patients’ independence through self-care management, and to improve quality of life for our patients and their families. Children growing up with hemophilia today face a much brighter outlook than did their peers of decades ago.
Staffed by a select team of highly trained and personally-motivated professionals, we provide patients and their families with the knowledge, medical care and support needed to manage their conditions, lessen their fears and live their lives on their own terms.