- What We Do
What We Do
In 1984, Dr. Margaret L. Bauman and Dr. Thomas L. Kemper were the first to identify neuroanatomical abnormalities in the limbic system and cerebellum in autism. These were the first observations to confirm the biological basis for autism. The Autism Research Foundation (TARF), founded in 1990, was born out of the need to insure continued funding for this research as well as the need to educate the autistic community about the importance for brain donations for research purposes.
TARF has been heavily involved in research devoted to the study of the neuropathological basis for autism in our own labs at the Boston Medical Center in Boston, MA. This research would never have begun and could not have been continued without the generosity and foresight of families, who during a very difficult time in their lives, made the decision to donate the brain of their autistic family member to research. The progress which has been made to date in our understanding of brain abnormalities in this disorder is, in large part, due to the availability of autopsy material for study and we are deeply grateful to these families for their substantial and very meaningful contribution to autism research. It is for this reason that, since its inception, TARF has been heavily involved in encouraging and helping families in understanding the importance of brain donations as well as what this process entails.
Because of this effort over the past 15 years, TARF has received and accumulated a sufficient quantity of brain tissue from autistic subjects in order to begin research studies. Initially, this tissue was used for neuropathologic studies. Since 1987, however, all autopsy material has been divided in half, one half being frozen and the other half used in the continuing studies of the neuropathology of autism. All of the frozen tissue has been stored at the Harvard Brain Tissue Resource Center in Belmont, Massachusetts. By 1997, we had accumulated a sufficient quantity of frozen tissue to begin studies by other techniques.
The Autism Research Consortium
In June 1996, we began our most exciting initiative to date. We brought together a small group of investigators, some of whom were directly involved in autism research and others who work in related fields, to form a "think tank" in order to discuss how to best utilize this valuable and limited tissue resource. It was decided that a multidisciplinary, integrated and coordinated approach would stand the best chance of maximizing the use of this tissue. To that end, the Autism Research Consortium (ARC) was formed. Current members of this research team include:
George M. Anderson, Ph.D, Yale University School of Medicine
Margaret L. Bauman, MD, Massachusetts General Hospital, Boston
Gene Blatt, Ph.D, Boston University School of Medicine
Edwin H. Cook, MD, University of Chicago
Jeanette Holden, Ph.D, Ongwanada Resource Center, Kingston, Ontario
Thomas L. Kemper, MD, Boston University School of Medicine
Marcie MacDonald, Ph.D, Massachusetts General Hospital
Francesca Persichetti, Ph.D, Massachusetts General Hospital
Jonathan LR Rubenstein, Ph.D, University of California at San Francisco
Stephen Vincent, Ph.D, Human Brain Tissue Resource Center, Belmont, MA
Gary L. Wenk, Ph.D, The University of Arizona
Andrew Zimmerman, MD, Kennedy Krieger Institute and Johns Hopkins University
Funding the Organization
The collaborative research effort has been funded by the generous support of the Stallone Fund for Autism Research, the Natalie Zinn Haar Foundation, the Herman Goldman Foundation, the Zalec Familian and Lilian Levinson Foundation as well as gifts from families and private individuals to The Autism Research Foundation (Dr. Margaret Bauman, principal investigator). The consortium's current research focuses on the neurochemical, neuroimmunological, genetic, and neuroanatomical analysis of the frozen tissue, with a major emphasis on regions of the brain which have been found to be anatomically abnormal in autism. In addition, the ARC is now actively seeking additional research proposals from investigators whose work could supplement the studies already underway. ARC has formed a Tissue Resource Committee (TRC) whose mission is to review any and all submitted proposals. Thus far, the TRC has already approved the use of the autism brain tissue for the following four research groups:
Ian Lipkin, M.D. and Mady Hornig, M.D., University of California Irvine
Elaine Perry, Ph.D., Newcastle General Hospital, England
Omanand Koul, Ph.D., Eunice Kennedy Shriver Center, Waltham, MA
S.H. Fatemi, M.D., Ph.D., University of Minnesota
TARF is now heavily committed to increasing the research being conducted in the field of autism and PDD by providing tissue to those researchers whose proposals are accepted by the Tissue Resource Committee. In addition, we have also tried to help these researchers obtain funding to conduct their pilot studies from a variety of resources. Finally, TARF has been active in disseminating information pertaining to research in autism through its website (www.ladders.org) and annual fall conference, Current Trends in Autism. Both the website and the conference provide information about and emphasize the importance of the most recent work being conducted in the field of autism research. In addition to presentations concerning the most recent progress in the science of autism, the annual conference provides parents and professionals with information regarding some of the various therapy options now available for autistic children, adolescents and adults. TARF's goal is to work toward improving the quality of life for all individuals affected with autism/PDD. We believe that effective medical and therapeutic interventions are within our grasp and that neurobiological research will lead to meaningful treatment of this disorder. You can help us, in a number of ways, continue this important research to find a cure for autism.