The United Cerebral Palsy Research and Educational Foundation, a not-for-profit 301 (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 Board of Directors is Mr. Paul A. Volcker.

The Foundation receives financial contributions and grants from a variety of sources including individuals, trusts and bequests, other organizations and foundations, the Combined Federal Campaign, the United Way, industry, and the United Cerebral Palsy Associations. In fiscal year 2002, the Foundation’s activities included investigator-initiated research grants, Foundation-initiated targeted research projects, scientific workshops, clinical investigator career enhancement awards, and the development and distribution of professional and public information materials. The Foundation works closely with professional societies, government agencies, and other non-government organizations and with United Cerebral Palsy Associations (UCPA) and its national network of affiliates.

1. RESEARCH PROGRAM ($697,000)

   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 national research plan and on the advice of the Foundation’s Research Advisory Council, the Foundation identified the following research areas for priority attention for Fiscal Years 2002 and 2003:

   • The biology of factors and mechanisms which adversely affect the developing brain resulting in cerebral palsy and/or disorders often 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.
   1. Research Grants

      In Fiscal Year 2002, the Foundation provided support for 15 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. 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 grant 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.

      In addition to the above Foundation funded projects, in fiscal year 2002 the William Randolph Hearst Foundation funded 3 research projects totaling $150,000; each of these projects had been previously reviewed by the UCP Research Foundation for scientific merit and significance and recommended for support.

      Examples of specific research areas supported by the Foundation in fiscal 2002 are: the development and evaluation of methods to protect the threatened brain of the fetus and newborn infant; the role of sub-clinical infection of the mother in 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.

   2. Research Workshops

      The Foundation occasionally organizes research workshops to assist the scientific community in exploring a research question 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. Two Foundation workshops were conducted in fiscal year 2002:

      1. The Status of Research On Developmental Brain Damage
         

         Research on injury to the developing brain is an area of international priority. Because of the diversity of the field, investigators in one area are often unaware of progress being made in other areas of developmental brain damage; examples of these areas are cerebral palsy, autism, epilepsy, and learning disorders. In order to foster interdisciplinary collaboration, a panel of scientists met in London, England in February 2002 to review the research status of these several areas. Common problems were identified and approaches to their solution discussed. The research workshop was jointly organized by the Little Foundation of Great Britain and the UCP Research and Educational Foundation. Proceedings of the workshop are being finalized for publication.

      2. Cytokines and Developmental Brain Injury
         

         Cytokines are cell chemical messages that work to regulate the metabolism of the cell and other tissues and to influence their activity (e.g. activate immune system cells). There are a number of cytokines, each with a specific set of functions. Cytokines are released in response to: bacterial invasion; circulating products of bacterial invasion of other cells; low levels of available oxygen (hypoxia); and decreased blood flow (ischemia). It is now recognized that cytokines play a role in the cascade of events that lead to developmental brain injury. Their early detection can be important in preventing brain damage. An international panel of 22 scientists, some expert in cytokine research and others in developmental brain injury, met in Boston, Mass in April 2002 to discuss their research, exchange methodologies and plan important next steps. The research workshop was planned jointly by the UCP Foundation and the Little Foundation of Great Britain. A publication summarizing the proceedings of the workshop is in preparation.

2. CAREER ENHANCEMENT: ETHEL HAUSMAN CLINICAL RESEARCH SCHOLAR AWARDS ($125,000)

   The Ethel Hausman Award provides salary and program support for 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 2002, there were two active awards, one awardee focusing on the nutritional needs of infants and children with cerebral palsy and the other on the cause and detection of visual impairment in children with cerebral palsy.

3. PROFESSIONAL AND PUBLIC INFORMATION

   The Foundation serves internationally as an information resource to clinicians, scientists and the public on clinical and research matters relevant to cerebral palsy. 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 110 Research Fact Sheets are available on the Foundation Web site which it shares with UCPA. 12 new Fact Sheets were prepared and distribute in fiscal year 2002.

   In fiscal year 2002, the Foundation prepared and distributed two Research Status Reports, one on The Prevention of Cerebral Palsy and the other on The Diagnosis of Cerebral Palsy. These reports document what is known about the prevention and the diagnosis of cerebral palsy, what is not known and to what research questions is emphasis being given. The reports are available on the Foundation’s Web site. Future status reports will address research on the treatment of the injured brain and management of resulting disabilities.

   In addition to analyzing and distributing research information, the Foundation staff, in collaboration with UCPA, responds daily to inquiries from the public about clinical care for children and adults with cerebral palsy. Parents seek information about the causes of cerebral palsy in their children 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. With the nearly continuing development of unconventional therapies that propose to offer significant improvements, the Foundation also serves as an unbiased analyst reporting on the reliability of reported results.

4. ANNUAL AWARDS OF ACHIEVEMENT
   1. The Weinstein-Goldenson Medical Science Award

      The Weinstein-Goldenson 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 2002 Award was presented to:

      Peter L. Rosenbaum M.D., FRCP (C)
      Professor, Department of Paediatrics
      McMaster University, Hamilton and
      The University of Toronto, Toronto
      Ontario, Canada

   2. The Isabelle and Leonard H. Goldenson Technology Award

      The Isabelle and Leonard H. Goldenson Award is presented annually to a scientist for outstanding contributions in the development and use of technology that enhances the quality of life of persons with cerebral palsy and other disabilities and their families. The 2002 Award was presented to:

      Katherine D. Seelman Ph.D.
      Professor of Rehabilitation Science and Technology
      School of Health and Rehabilitation Science
      University of Pittsburg
      Pittsburg, Pennsylvania

5. STAFF ACTIVITIES

   In addition to the management of the above programs and activities, Foundation staff works closely with other organizations having programs of importance to cerebral palsy and the disabilities associated with it. The staff is actively engaged in the development of the programs of the newly established Center for Birth Defects and Disabilities of the Public Health Service Centers for Disease Control and Prevention (CDC). Serving as a consultant to the National Institute of Disability and Rehabilitation Research (Department of Education), staff regularly serves as reviewers of the scientific content of its awards. Serving as an appointed consultant to the National Institutes of Health (NIH), a staff member provides advice on research awards and research policy as a member of the National Advisory Council of the National Center for Complimentary and Alternative Medicine.

   In the private sector, staff continues to serve on the scientific advisory committees of academic institutions and research institutes concerned with neurological, neuromuscular, and cerebrovascular disorders. Also by serving as guest lecturers on the teaching faculty of medical schools nationally, staff is able to provide the faculty and students with an overview on cerebral palsy and the exciting research that may lead to improved patient care.

   Thus, the activities of the staff continue to meet the responsibility of the Foundation to serve as a national resource to the professional community. Its activities also continue to serve the public as an authoritative resource for research and clinical information, assisting in the translation of the results of research into patient services.

“There is nothing worse than treating a disturbance with another disturbance.”

Hippocrates