Fiscal Year 2003 (October 1, 2002-September 30, 2003)
The United Cerebral Palsy Research and Educational Foundation, a not-for-profit 501 (c) (3) organization, was founded in 1953 as a national organization in the non-government sector for the stimulation of needed research, to assist in professional education and to provide for public information relevant to cerebral palsy and related developmental brain injury. It is governed by voluntary officers and a Board of Directors. The Foundation President is Mr. Frederick H. Joseph; the Chairman of the Foundation Board of Directors is Mr. Paul A. Volcker; the Foundation Medical Director and COO is Dr. Murray Goldstein.
The Foundation receives financial contributions and grants from a variety of sources including individuals, trusts and bequests, industry (undesignated funds), other organizations and foundations, the Combined Federal Campaign/the United Way, industry, and United Cerebral Palsy Associations. All funds contributed to the Foundation are expended exclusively in direct support of its grant programs. In Fiscal Year 2003, the Foundation’s activities included investigator-initiated research grants, Foundation-initiated targeted research projects, scientific workshops, clinical investigator career enhancement awards, institutional post-doctoral training grants and the development and distribution of professional and public information materials. The Foundation works closely with: professional societies, government agencies; other non-government organizations; and with United Cerebral Palsy Associations (UCP) and its national network of affiliates.
In October 2002, The Foundation Board of Directors, assisted by scientific and administrative consultants, discussed and developed a Strategic Plan to govern Foundation activities for the future. The Plan documents areas of research and educational priorities, Board membership and responsibilities, and the administrative structure and financial goals of the Foundation.
- RESEARCH PROGRAM ($546,211)
The primary objectives of the Foundation’s research activities are the prevention of cerebral palsy and improvement in the quality of life of persons with disabilities due to cerebral palsy and related motor control disorders of the developing brain. In accordance with its Strategic Plan and with the advice of the Foundation’s Scientific Advisory Council, the Foundation identified the following research areas for priority attention for Fiscal Year 2003-2005:
- The biology of factors and mechanisms which adversely affect the developing brain resulting in cerebral palsy and/or disorders associated with cerebral palsy (e.g. visual system impairment).
- The development and evaluation of research methodologies for use in studies of the etiologies, pathobiologies, prevention, diagnosis or therapy of cerebral palsy and the impairments or disabilities associated with it.
- The development of interventions to prevent developmental brain damage associated with cerebral palsy.
- The development and evaluation of interventions for improved diagnosis or clinical management of the biological impairments or functional disabilities associated with cerebral palsy.
- The effects of aging on persons with disabilities due to cerebral palsy; the prevention and treatment of increased disability.
- Research Awards ($531,211)
In Fiscal Year 2003, the Foundation provided support for 18 research projects addressing the development of methods to prevent the occurrence of developmental brain damage to the fetus during pregnancy, the infant during the birthing process, and the child during the early years of life; it also supported research focused on the development and evaluation of improved methods of clinical intervention to improve functional activities of daily living for children and adults with disabilities due to cerebral palsy. These projects utilized basic science and clinical science methodologies, applying them to impaired function of the developing brain’s motor systems and to the neurological and neuromuscular systems that control muscle activity and coordination. Foundation research support provides for cutting-edge research that explores new ideas on a pilot basis. The program is an investment in new approaches which could have profound impact on the prevention of brain damage, the lessening of disability and the improvement of function.
As a collaborative endeavor, in Fiscal Year 2003 the William Randolph Hearst Foundation funded 5 research projects totaling $200,000; each of these projects had been reviewed by the UCP Foundation for scientific merit and significance and recommended for support.
Examples of specific research areas supported by the Foundation in Fiscal Year 2003 are: the development and evaluation of methods to protect the threatened brain of the fetus and newborn infant (neuro-protection); the impact of infection and hypoxia on the myelination of brain cell axons; role of sub-clinical infection of the mother on damage to the fetal brain; the impact of maternal poor thyroid function on the maturation of the fetal brain; predicting the long term effects of cerebral palsy on function and activities of daily living; evaluating the effects of new therapies on movement disorders associated with cerebral palsy; and evaluation of a new intervention to increase calcium deposition in the “thin” bones of non-ambulatory children. In addition, the Foundation initiated a targeted program to evaluate the usefulness of selected “alternative medicine” interventions which claim to improve function in children with disabilities due to cerebral palsy. One alternative medicine investigation is a pilot study evaluating the biological effects of hyperbaric oxygen therapy on the brains of children with two different clinical forms of cerebral palsy and the resulting changes on impairment and disability. This study is scheduled to start early in Fiscal Year 2004.
- Research Workshops ($15,000)
The Foundation periodically organizes research workshops to assist the scientific community in exploring research questions of promising significance. Selected international experts are brought together to explore a research problem: what is known; what is not known; what needs to be known. The results of their deliberations are published as a stimulus for further research progress.
In 2003, the Foundation collaborated with the Castings Trust (Great Britain) in the conduct of a Workshop on Co-Morbidities. It reviewed the status of information on developmental brain dysfunctions that often co-exist with the motor impairments characteristic of cerebral palsy. Examples of these are: visual difficulties; hearing loss; convulsive disorders (epilepsy); learning disabilities; cognitive deficits; difficulty with communication; and behavioral problems. The proceedings of the workshop were published in August 2003 as a supplement to a leading international medical journal. The Foundation also provided partial support for a symposium held at the time of the annual meeting of the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) on the status of information on alternative medicine; the report of the symposium was published in the Proceedings of the AACPDM.
- CAREER ENHANCEMENT: ETHEL HAUSMAN CLINICAL RESEARCH SCHOLAR AWARDS ($225,000)
The Ethel Hausman Clinical Research Scholars Award provides salary and program support for each of three years to assist outstanding junior investigators to establish a scholarly program of clinical research, teaching and related clinical services in an academic setting. The intent of the program is to prepare a cadre of clinician-scientists for careers as leaders in the academic aspects of cerebral palsy. Previous awardees are now recognized nationally as academic leaders in neonatal medicine, epidemiology, and restitution of function. In Fiscal Year 2003, there were three active awards: one awardee focusing on the nutritional needs of infants and children with cerebral palsy; another on the epidemiology and prevention of stroke in children; and the third on the efficacy of both established and new methods of physiotherapy on improvement of function.
- INSTITUTIONAL CLINICAL FELLOWSHIP TRAINING GRANTS ($99,000)
A new program of Institutional Clinical Fellowship Training Grants was initiated in Fiscal Year 2003. Grants are awarded to institutions in the USA to provide fellows with one year of clinical research and/or clinical care experience in programs of direct relevance to cerebral palsy. Three awards were made in Fiscal Year 2003: one in pediatric neurology, one in pediatric rehabilitation medicine and one in physiotherapy.
- PROFESSIONAL AND PUBLIC INFORMATION ($300,000)
In collaboration with UCP, the Foundation serves internationally as an information resource to clinicians, scientists and the public on clinical and research matters relevant to cerebral palsy and other developmental disorders and disabilities. The Foundation regularly prepares and distributes Research Fact Sheets that summarize in non-technical language articles from the research literature and also comments on scientific issues of importance to the study of cerebral palsy and related disorders of the developing brain. A total of 122 Research Fact Sheets are available on the Foundation Web site which it shares with UCP. 12 new Research Fact Sheets were prepared and distributed in Fiscal Year 2003.
In Fiscal Year 2003, the Foundation prepared and distributed two Research Status Reports: a Research Status Report on the Diagnosis of Cerebral Palsy and a Research Status Report on the Treatment of Cerebral Palsy. The reports summarize the present status of basic science and clinical research on these topics and compliment the report of 2002 on the Research Status Report of the Prevention of Cerebral Palsy. The reports have been widely distributed and are available on the UCP-Foundation Web site.
In addition to analyzing and distributing research information, the Foundation staff responds daily to inquiries from the public about clinical care for children and adults with cerebral palsy. Parents and other care givers seek information about the causes of cerebral palsy and the status of therapeutic interventions that might be of assistance in restoring function. Newspaper and television reporters seek authoritative information about the validity and applicability of new information being published. Clinical care personnel and scientists request information about the status of research information and references to the scientific literature. With the nearly continuing development of therapies that propose to offer significant improvements, the Foundation also serves as an unbiased analyst commenting on the reliability and potential applicability of reported results. However, the Foundation does not serve as a clinical care approval or disapproval agency or to establish “best clinical care practices”; it serves the public as an information resource.
- ANNUAL AWARDS OF ACHIEVEMENT
- The Weinstein-Goldenson Medical Science Award
The Weinstein-Goldenson Medical Science Award is presented annually to a clinician-scientist for outstanding contributions in medical research which enhance the lives of persons with cerebral palsy and their families. The 2003 Award was presented to:
Isabelle Rapin, M.D.
Professor of Neurology and Pediatrics
Albert Einstein College of Medicine
Bronx, New York; NY
- The Isabelle and Leonard H. Goldenson Technology and Rehabilitation Science Award
The Isabelle and Leonard H. Goldenson Technology and Rehabilitation Science Award is presented annually to a scientist for outstanding contributions in the development and use of technology and rehabilitation methodologies that enhance the quality of life of persons with cerebral palsy and other disabilities and their families. The 2003 Award was presented to:
Naomi Lynn Hurwitz Gerber, M.D.
Chief, Department of Rehabilitation Medicine
Clinical Center, National Institutes of Health
- STAFF ACTIVITIES
In addition to the development and management of the above programs and activities, Foundation staff works closely with other organizations having activities of relevance to cerebral palsy and the disabilities associated with it. In the government sector, the staff serves as ad hoc advisors for the development and evaluation of the programs of the Center for Birth Defects and Disabilities (Public Health Service Centers for Disease Control and Prevention), the National Institute of Disability and Rehabilitation Research (Department of Education), and to several of the Institutes of the National Institutes of Health.
In the private sector, staff continues to serve on the scientific advisory committees of several academic institutions and research institutes concerned with neurological, neuromuscular, and cerebrovascular disorders. Also by serving regularly as guest lecturers on the teaching faculty of medical schools nationally, staff is able to provide the faculty and students with an overview of the present status of knowledge about cerebral palsy and the exciting research that may lead to improved methods of prevention and patient care.
The activities of the staff focus on meeting the responsibilities of the Foundation to serve as a national resource on research and clinical information to other organizations, the professional community and the public; it does this by assisting in the development of new research, stimulating training and by the translation of the results of research into programs of patient service.
“If you think seeking new knowledge is expensive, try (the cost of) ignorance.”