Program Overview

Fiscal Year 2005 (October 1, 2004-September 30, 2005)

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, each of whom is elected annually. The FY 2005 Foundation President was Mr. James C. Stearns; the Chair of the Foundation Board of Directors was Mr. Paul A. Volcker; the Chair of the Foundation’s Scientific Advisory Council was Joseph J. Volpe, MD. The Foundation Director was Murray Goldstein, DO. Upon Dr. Goldstein’s retirement on September 30, 2005, Mindy Lipson Aisen, MD assumed responsibility as Foundation Director and CEO. Carl Gunderson, MD continues as Foundation Deputy Director.

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, and the United Cerebral Palsy Associations. In fiscal year 2005, 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 (e.g. American Academy for Cerebral Palsy and Developmental Medicine), government agencies (e.g. National Institutes of Health, Centers for Disease Control, the National Institute of Disability and Rehabilitation Research); other non-government organizations (e.g. William Randolph Hearst Foundations, The Dana Foundation, F.M. Kirby Foundation); universities, medical schools, hospitals, research institutes, and with the United Cerebral Palsy Associations (UCPA) and its national network of affiliates.

In October 2002, The Foundation Board of Directors, assisted by scientific and administrative consultants, 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. The Plan continues to be the administrative basis for the Foundation’s activities.

1. RESEARCH PROGRAM
   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 Years 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.
   1. Research Awards ($963,401)
      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. See the attached for a list of projects receiving financial support in FY 2005.

      In Fiscal Year 2005 the Foundation provided support for 23 biomedical and bioengineering pilot research projects targeted at the development of methods to prevent the occurrence of developmental brain damage to the fetus during pregnancy, to the infant during the birthing process, and to 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 (CP). These projects utilized basic science, clinical science and bioengineering 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. Research was also supported on associated injuries commonly associated with CP such as visual impairment and hearing loss. Special emphasis continued to be given to the stimulation of needed research on the long term clinical consequences of CP in the aging population.

      As collaborative endeavors, in fiscal year 2005 the William Randolph Hearst Foundation funded three research projects totaling $150,000; each of these projects had been reviewed by the UCP Foundation for scientific merit and significance and recommended for support. The F.M. Kirby Foundation provided funds for the support of a research endeavor exploring the efficacy of hyperbaric oxygen therapy in children with cerebral palsy and the Dana Foundation provided funds for the development of a revised definition and classification of cerebral palsy.

      Among the projects supported by the Foundation, Foundation grantees demonstrated that the major cause of cerebral palsy in the premature newborn infant, periventricular leukomalacia (PVL), was due to injury to a developing brain cell responsible for myelinating the developing nerve cell (the preoligodendrocyte). The injury is due to either lack of oxygen (e.g. placental insufficiency) or to inflammation; more probability to both. The cellular and molecular basis for this injury critical to development is being explored and mechanisms for protecting the cell developed. Addressing the areas of brain injury in cerebral palsy, brain imaging evidence demonstrates that injury to the sensory tracts of the brain are an integral part of the cerebral palsy syndrome. Not only are the motor control areas of the brain injured, but also the sensory tracts which provide information to the motor control areas. In the study of methods to improve function, constraint induced movement therapy has drawn a lot of clinical attention as a method for increasing motor control. Studies are underway both to evaluate the efficacy of this therapy in restoring lost function in upper limbs and lower limbs, and also to study supposed changes in brain that are believed to occur from this type of clinical intervention.

   2. Research Workshops
      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 2005, the Foundation collaborated with the Castang Foundation (Great Britain) in the conduct of a Workshop on Stroke in Children exploring the incidence of stroke in this population and identifying risk factors leading to brain injury due to vascular events (brain hemorrhage; vascular occlusion; increased clotting susceptibility). The proceedings of the workshop are to be published as a supplement to a leading international medical journal.The Foundation also provided partial support for a symposium held at the annual meeting of the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) on restitution of function in children with disabilities due to CP.

      The Foundation in collaboration with the Castang Foundation (Great Britain) and the NINDS/NIH organized and conducted a symposium on the Definition and Classification of Cerebral Palsy. Financial assistance was received from the Dana Foundation for this endeavor. The definition used at this time is a product of a workshop held in 1963; the classification systems presently used are the product of a wide variety of meetings and activities. In July 2004, 30 international experts discussed the needs for changes in the present definition and classifications in order to provide a basis for improved communication between clinicians, investigators and public health workers. As a result of the deliberations of the panel, a proposed new definition and classification system has been developed. The proposed new definition and classification has been published in an international journal (DMCN) soliciting comment on them. It is anticipated that a final product will be available in January 2006.

2. CAREER ENHANCEMENT: ETHEL AND JACK HAUSMAN CLINICAL RESEARCH SCHOLARS AWARD ($225,000)
   The Ethel and Jack 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 2005, there were three active awards: one awardee focusing on pain in persons with cerebral palsy; another studying risk factors for perinatal stroke; and the third evaluating functional outcomes in response to therapy.
3. PROFESSIONAL AND PUBLIC INFORMATION ($414,000)
   As a joint activity with UCPA, 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 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 146 Research Fact Sheets are available on the Foundation website which it shares with UCP (www.ucp.org). Twelve new Research Fact Sheets were prepared and distributed in Fiscal Year 2005.

   In addition to analyzing and distributing research information, the Foundation and UCP staff respond daily to inquiries from the public about clinical care and other needs of 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.

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 2005 Award was presented to:

      Donna Ferriero, M.D.
      Neonatal Brain Disorders Center
      University of California San Francisco
      San Francisco, California
      

   2. The Isabelle and Leonard H. Goldenson Technology and Rehabilitation Science Award
      The Isabelle and Leonard H. Goldenson Award is presented annually to a scientist for outstanding contributions in the development and use of technology and rehabilitation methodologies that enhances the quality of life of persons with cerebral palsy and other disabilities and their families. The 2005 Award was presented to:

      Deborah Gaebler-Spira, M.D.
      Pediatric Rehabilitation Program
      The Rehabilitation Institute of Chicago
      Chicago, Illinois
      

5. 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 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 the training of needed personnel, and by the translation of the results of research into programs of patient service.

   Science is the art of asking meaningful questions.
   Research is a method of providing answers to those questions.

   The UCP Research and Educational Foundation assists the
   biomedical and bioengineering research communities in
   identifying meaningful questions pertinent to cerebral palsy
   and seeking their answers.
   --M. Goldstein

© UCP Research & Educational Foundation, October 2005

View a Printer-Friendly Version

Send This Article To A Friend