In the late 1940s Dorothy Watts White, RN worked as a nursing supervisor in pediatrics at Rochester General Hospital - she recognized that a number of children were being seen in need of help for problems related to bleeding. At the time, Mary Gooley worked for Dororthy White - they had been introduced by a prominent surgeon (Audlay Stewart, MD) who had performed surgery on Mary's father. Mary was called home from school in Michigan to care for her ailing father (she studied Laboratory Science for two years - the extent of her academic medical education). For several years, Dorothy White and Mary Gooley treated people who needed their help ("behind a curtain" - it was not a recognized program) at Rochester General Hospital.
One winter evening in 1947, Dorthea Golemb came in to the hospital with her nine year old son, who had been stuck, unsuccessfully, many times by other providers in town attempting to get an IV started. Dorothy White started an IV for transfusion with just one stick. The two women bonded immediately. Young “Chip” Golemb was the first person with hemophilia that Mary Gooley had ever seen.
"The two Dorothys" as Mary recalls them (Dorothy White and Dorothea Golemb) acting on behalf of underserved children with bleeding disorders "were a force to be reckoned with." Ultimately, Dorothy and Dorthea organized 12 area 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. 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 when they needed it – including 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 was 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. Noreen Hickey was another early administrative 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 health care 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. Due to the relationship Mary established with Dave Stewart, then President of Blue Cross and Blue Shield of the Rochester Area, Rochester’s Blue Cross plan was the first health insurer in the United States to cover blood products used to treat people with hemophilia. The Center’s home program began in 1971 – typically Mary would visit patients where they needed her, their home, their place of work, on vacation (a tale from the 1000 Islands).
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, long-term consequences.
In the 1980s and 1990s, 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 broadening the Center's clinical focus and widening its potential base of support, both with services and via fundraising. This could help the Center remain financially viable and continue to meet the needs of patients.
Mary Gooley served as the Center's first President 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, Rochester's hemophilia 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. In the 1970s, patients and staff helped to lobby successfully for federal funding for comprehensive hemophilia care, which helped to spread the Treatment Center model. Under NHF’s umbrella, Mary traveled the country, assisting other communities seeking to establish what she 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 and well being by teaching them and encouraging them to care for themselves and supporting them when they can't or don't. Today, many adults with hemophilia persevered through trying times and may live with numerous health complications. Adults with hemophilia today represent the first generation of people with hemophilia forced to cope with typical age-related health risks faced by the general population, including heart disease and cancer. Life expectancy in 1960 for a child born with severe hemophilia was just under 30 years. Children growing up today with hemophilia face a much brighter outlook than did their peers of decades ago, including life expectancy that virtually equals that of the general population. Hemophilia treatment and clotting factor therapies exist and are effective for most people who need them..Cures for hemophilia do not exist yet, although work is proceeding and the outlook is encouraging.
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, enhance their independence and live their lives on their own terms.