THE UNITED CEREBRAL PALSY RESEARCH AND

EDUCATIONAL FOUNDATION

Development of the Foundation and Its Programs

(As told to Dr. M. Goldstein by Mr. L. Goldenson, Mr. J. Hausman, Mr. J. Kluge, Mr. K. Auerbach, Dr. W. Berenberg and Dr. L. Sternfeld)

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.

Initially, funding for the Foundation’s programs and administrative costs were provided nearly exclusively by UCPA. Over time, this has changed so that UCPA now makes an annual contribution of $250,000 in support of the Foundation’s $1.5 million grant

program and also provides funding and facilities for its administrative needs. The remainder of the Foundation’s present (FY 2005) $2 million annual budget comes from annual contributions, principally from present and former Foundation Board members. In addition, a relatively small endowment fund has been established, the earnings from which are available to the Foundation.

Present Program

The present goals of the Foundation are the support of research and training to prevent cerebral palsy and to improve the quality of life of persons with disabilities due to cerebral palsy and related disorders of the developing brain. It also has responsibility for providing the public with information about research and clinical care relevant to cerebral palsy and the disabilities associated with it. 

RESEARCH

Research has become expensive, often because of the costs of high technology and the required salary support of highly skilled research staff. The major supporter of medical research is now the Federal government. The usual medical research grant awarded by the government is $300,000 a year for each of four years. At the present time, the Foundation is not in a financial position to provide this level of funding; however with public funds for research becoming flat or declining, there is a growing need for private funding of CP-related research.

The Foundation Research Grant Program now provides support for pilot projects; venture capital investments in exploring new ideas on the cutting edge of science. Foundation research grants are awarded in the amount of up to $50,000 a year for each of two years. With the results obtained from Foundation supported pilot projects, basic science and clinical investigators are better able to explore their ideas, obtain preliminary results and compete more successfully for higher cost and longer term government support. Also, the Foundation research review process has been streamlined so that an investigator can apply to it at any time and usually receive information about the success or failure of the grant proposal within 6-8 weeks; the government process has established dates for the receipt of applications and usually takes up to one year to be completed. The Foundation’s research program encourages the exploration of new ideas of excellence, significance and urgency.  However, in the future, the Foundation would like expand their role in the continuum of bench to bedside research and partner with other institutions in sponsoring clinical trials for promising pharmaceutical and rehabilitative interventions for CP-related impairments and CP prevention so that clinical care for these individuals can be improved and CP incidence decreased.

In addition to the financial support of research, the Foundation has an active role in stimulating needed new research. The Foundation organizes 1-2 research workshops each year in which 10-15 investigators explore together the status of information about a specific research problem (“what we know”), identify the new information needed for its solution (“what we need to know”) and agree to cooperative efforts to solve the problem.

Finally, Foundation staff is actively involved in the programs of other organizations with

responsibilities for the conduct and/or support of research relevant to cerebral palsy. This

includes: medical school teaching; lecturing to health care faculty; and serving on scientific advisory panels of academic institutions, other Foundations and organizations, industry and government agencies. Foundation staff brings scientific, technical and/or operational skills to these organizations, encourages both the investment of their resources to research on cerebral palsy, and furthers collaborative efforts among them and between them and the Foundation.

PROFESSIONAL EDUCATION

In the 1950s, it was very difficult for persons with cerebral palsy to find clinicians who were well prepared to meet their special health care needs. The Foundation established its

Traineeship Program to address this problem. Clinicians who had already completed residency training (e.g. pediatrics, orthopedics, children’s dentistry) were provided with a $15,000 stipend for a year of advanced training in cerebral palsy. However, instead of entering community practice, Foundation supported trainees were often recruited to careers in academic medicine and clinical research. The program results were excellent (academic medicine) but not what the Foundation had planned (clinical care).

With the development and growth of the government’s research training programs providing skilled personnel for careers in academic medicine and dentistry, question was raised by the Foundation Board  about the need for and priority of the Foundation traineeship program; this was stimulated by anticipation of a shortage of future funding for the Foundation’s research grant program. In 1996, the Board acted to discontinue the program. In 2003, the issue of Foundation support of professional training was reopened. On advice of the Foundation’s Research Advisory Council, the Board initiated a pilot program of support for one year of academic training of clinicians interested in cerebral palsy therapy or clinical research. The program is active in three academic centers and its success will be evaluated in 2005.  

In 1995, the Foundation launched an academic career development award program: The Ethel Hausman Clinical Scholars Award. The intent of the program is the establishment of focal points in academic institutions addressing cerebral palsy (“the cerebral palsy professors for the future”). It provides support for a young person who has completed training and is now beginning a career in academic medicine including clinical research, teaching and specialized clinical services. The Award is in the amount of $75,000 for each of three years.  It is a highly successful and active program. Its graduates now hold positions of academic leadership in university medical centers nationwide.

PUBLIC INFORMATION

The general public, the communications industry, UCPA affiliates and clinicians from other disciplines seek authoritative information about research advances and clinical care relevant to cerebral palsy. As a joint effort with UCPA, the Foundation serves as a national information resource addressing this specialized need. It has published and distributed over 130 Research Fact Sheets about recent advances in cerebral palsy research. Also, in 2003 it authored and distributed three Research Status Reports synthesizing and summarizing the status of research on CP prevention, on CP diagnosis and on CP treatment. In addition, the Foundation responds directly to E mail inquiries, letters and phone calls about cerebral palsy; these now average about 900 inquiries/year. With technical assistance from the Foundation, the UCPA information office receives and responds to about 2000 health related inquiries.

Thus, in the 50 years of its activities, the Foundation has become established as the research and educational arm of the national cerebral palsy movement. Its program is relatively small, highly targeted and cost effective. Results have already essentially removed two of the former major causes of cerebral palsy: Rh blood type incompatibilities and German measles. Within the past two decades, the criteria for the diagnosis of cerebral palsy have been clarified, the brain pathology causing it delineated and the pertinent research questions for prevention and therapy identified. The task ahead is to answer those questions through the conduct of clinical trials.