Foundation History

The United Cerebral Palsy Research and Educational Foundation (Foundation) was founded in 1955 by Mr. Leonard Goldenson (Chairman of the Board of UCPA) and Mr. Jack Hausman (Vice Chairman). It was chartered in the State of New York in 1958.

In 1955, the United Cerebral Palsy Associations (UCPA) and its affiliates were serving as national and local focal point for advocacy and for patient services for persons with cerebral palsy, the latter via the affiliates. At that time, there was no organization in government or the private sector concerned with either research on cerebral palsy or the recruitment and education of physicians with expertise in this area. The Foundation founders decided the time had come to initiate a national research and training effort to prevent cerebral palsy and improve health care services.

The Foundation was established by them as an organization closely associated with, but not part of UCPA. The founders felt that the demand for services was so great that research support would receive secondary consideration by a service oriented organization; also, that persons of prominence and wealth could be recruited to the support of a research organization. The Foundation was organized to have its own Officers, Board, programs and budget, but with close working relationships between the governing Boards and staffs of both organizations.

The Foundation program initially supported research and clinical training with modest one year grants. Proposals were brought to the attention of the Foundation by its Board members, some of whom were physicians and scientists. With the growth of the program due both to new research opportunities and to recognition by clinician-scientists of the Foundation’s activities, a more formal procedure was established for the solicitation of grant proposals and for their review by panels of experts in the field. The final decision on grants was and continues to be made by the Foundation Board twice a year.

In the late 1950s and early 1960s, two NIH Institutes were organized that would serve as focal points in the federal government for research and research training activities in this area: The National Institute of Neurological Diseases and Blindness and the National Institute of Child Health and Human Development. Their programs have been reinforced in recent years by the establishment of cerebral palsy research and training activities in the government’s National Institute of Disability and Rehabilitation Research(Department of Education) and the Center for Birth Defects and Developmental Disabilities (Centers for Disease Control and Prevention). The government’s investment in cerebral palsy research and training in 1999 was about $100M. In the private sector, voluntary organizations have initiated research and training programs in related areas: e.g. epilepsy, mental retardation, birth defects, autism. However, there is no other private sector organization at this time with programs focusing on cerebral palsy research and training.