Mary M. Gooley Hemophilia Center

Description

About Us
Founded in 1959 by Mary M Gooley with the help of the Rochester Chapter of the National Hemophilia Foundation NHF the Mary M Gooley Hemophilia Center located in Rochester New York has been serving people who suffer from bleeding and bloodrelated disorders for over 50 years Our Center was one of the first chartered NHF chapters and the first freestanding comprehensive care clinic in the nation We are in fact one of very few combined treatment centers and chapters in the country

We pride ourselves on providing firstclass treatment advocacy and research to individuals and families affected by various inherited diseases including disorders related to homeostasis blood clotting and iron overload

EXPERTISE QUALITY VALUE SUPPORT

These are several of the underlying principles guiding our actions We constantly strive to increase patient independence through selfcare management and to thereby improve the quality of life for our patients and their families By utilizing a multidisciplinary comprehensive care treatment model we are able to provide a broad range of services to patients including preventive care thereby reducing longterm costs to the medical community Staffed by a select team of highlytrained doctors nurses and social workers the Center provides patients with the education and skills necessary to manage their condition lessen their fears and live normal active and productive lives

Our Mission
Mission
Our mission is to provide means to improve the lives of people and families affected by bleeding disorders and iron overload

Vision
The Centers compassionate comprehensive care leads to independence and wellness among patients and their families We provide hope and we A C T for a bright future

quotAccess to Care Today Achieving Cures for Tomorrowquot

History

Our History
In 1953 a group led by Dorothy Watts White and Dorothea Golemb organized the Rochester Chapter of the National Hemophilia Foundation for the purpose of providing advocacy support and assistance to people affected by hemophilia It was one of the first chartered hemophilia chapters in the nation In 1959 the chapter with the help of Mary Gooley established our Hemophilia Center as a specialty outpatient clinic offering comprehensive care for the diagnosis and treatment of people with hemophilia and related clotting disorders It was one of two such centers in the country and the first to be organized as a freestanding clinic

In addition to providing medical care and support services the Center has also throughout its history

participated in clinical research

advocated for individuals and for the hemophilia
community

educated the healthcare community and the public
about bleeding and bloodrelated disorders

Mary M Gooley served as our Centers first executive director until she retired in 1986 During the 60s 70s and 80s our Center remained at the forefront of hemophilia care Our staff helped establish programs in Buffalo Syracuse the Southern Tier and Albany Together the patients and staff successfully lobbied for federal funding for comprehensive hemophilia care

Our Center continued to grow and change with the times often leading the way with the newest products and treatments for patients There were many medical and scientific advances to enjoy Then came disaster

Because bloodclotting products were contaminated by our nations tainted blood supply AIDS and Hepatitis threatened to wipe out an entire generation of patients with hemophilia With the onset of the AIDS virus came indescribable human tragedy and suffering It also brought with it a huge medical challenge how would we treat people with hemophilia

The Center also faced a tremendous organizational challenge of how it would remain viable to provide comprehensive hemophilia care if it lost a large number of patients Where would we get funding And what kind of care would be provided to the patients if the Center went out of business How could we as a Center ensure continuation of care for those with hemophilia whether or not they had contracted AIDS These were merely a smattering of the questions and challenges we faced

After careful study and consideration the board of directors recommended expanding the Centers mission by widening its potential base of support This would allow us to stay funded and to continue meeting the needs of patients

Later the Center began applying its experience in comprehensive hemophilia care to other inherited chronic disorders von Willebrand Disease and hemochromatosis In offering comprehensive medical and psychosocial services to people affected by these disorders the Center maintained its role as a national leader

Today we provide worldclass treatment advocacy and research to individuals and families affected by various inherited disorders including disorders related to homeostasis blood clotting iron overload and a rare enzyme deficiency called Gauchers Disease We strive to increase patient independence through selfcare 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 20 years ago

Staffed by a select team of highly trained doctors nurses and social workers we provide patients with the education skills and medical care necessary to manage their conditions lessen their fears and live normal active productive lives