Cure Autism Now(CAN) Funds research in search of answers
COSAC Outreach, Fall/Winter 1997
by Jon Shestack
The Cure Autism Now (CAN) foundation was established in California almost two years ago by a group of parents, clinicians and researchers. In looking for answers for their own children and patients, they were shocked to find how little there was in the way of both existing biological treatments and the effort to find new ones — especially given the prevalence of this disease.
Though many in the scientific community told parents they could not hurry science and that if an answer was to be found “they” would find it, the parents of CAN felt differently. Representing fields such as business, construction and film production these parents realized that with enough determination, money and manpower they could in fact hurry science, and help to find answers sooner. To do any less for their children was unacceptable.
CAN’s mission is to face this challenge with a three-fold approach.
First and foremost, CAN funds essential pilot research. CAN has established an outstanding Scientific Advisory Board comprised of top researchers in fields such as developmental biology, neuroimaging, genetics, immunology and molecular biology. This board evaluates the criteria needed to most effectively meet our goals, reviews all applications for funding, and ensures the highest possible level of accountability.
CAN also works on a practical level to unite families, clinicians and researchers — communities that have long been disconnected from each other. These efforts include the dissemination of the latest in biological and treatment information, conferences which bring together families and members of the scientific and medical communities, and think tanks which bring together the top researchers in the field of autism and other highly relevant fields. This collaborative effort also facilitates research on a pragmatic level allowing researchers to link with families who can then become subjects in their studies.
Finally, CAN pursues a strong activism/awareness program. CAN works with national and local media, Congress and the National Institutes of Health to encourage more aggressive funding of biological research in autism.
Although CAN has already funded several innovative initiatives, January of 1998 will be the first official funding cycle. CAN’s intention is to maintain a balance of basic research with long-term significance as well as research with more immediate clinical implications.
CAN offers funding for pilot studies generally in the $5,000 – $30,000 range. The CAN Scientific Advisory Board meets twice yearly to review proposals. The next deadline for submitting grant proposals is November 1, 1997. The next meeting to review research proposals will be in January 1998.
* CAN will fund four $30,000 pilot studies in 1997, and more if funding becomes available. * CAN also offers four Young Investigator’s Awards per year, at $40,000 each, renewable for a second year, to encourage bright young scientists to enter the field of autism research under the mentorship of promising established researchers. * CAN sponsors Think Tanks and Consensus meetings to help chart the future course of autism research and to encourage collaboration and coordination among researchers.
Following are some examples of the research efforts CAN has funded so far:
Cost of Disease Report: Commissioned Sandy Geschwind, PhD, Public Health Epidemiologist to produce Preliminary Report – now submitted to Journal of Autism And Developmental Disorders. Preliminary estimates show cost of disease to be $13.3 billion annually, while NIH expenditure for biomedical research in autism is less than $12 per autistic person annually. This document was generated in an effort to increase spending on autism research. The report is now widely quoted and is regularly cited by the NIH. Submitted for Publication.
Consensus on Diagnosis: Over thirty experts in the field of pediatric neurology participated in this CAN consensus conference. Their goal was to work together to compose a basic document that can be used as a guide for pediatricians across the country who are first faced with a very young child who may be autistic. The results are expected to be published in 1998.
Infectious Disease: Principal Investigator (PI) – Ian Lipkin, MD, PhD, UC Irvine, Neurobiology and Molecular Genetics Depts. A study of possible viral etiology in autism. Dr. Lipkin specializes in Borna virus research and neuropsychiatric disease. This study is co-funded with NAAR.
Gastroenterology: PI – Richard Sandler, MD, Rush, St Luke’s Hospital, Chicago Gastroenerological dysregulation and it’s possible relevance to Autism: a prelimenary investigation and treatment study.
PI: Richard Sandler, MD, Rush, St Luke’s Hospital, Chicago Gut Permeability in Autism, replication of a recent study showing increased gut permeability in autistic children.
Metabolic Studies: PI: Salvatore DiMauro, MD, Neurologist – specialty in mitochondial disease, Columbia University, NY Dr. DiMauro and Jay Lombard, MD (CAN Clinician’s Committee), investigated possible mitochondrial dysfunction in autism, based on small sample of preliminary data.
PI: Ted Page, PhD, University of California, San Diego, Neurobiology Dept. Dr. Page is conducting a study of purine metabolism defects in autism, and the development of potential treatment modalities. Additional funding for this study comes from the Stallone Foundation
Immunologic Studies: PI: Anne Connolly, MD, Washington University, St. Louis Dr. Connolley, in conjunction with CAN Clinician Committee member, Michael Chez, MD, is investigating preliminary data indicating antibodies to the temporal lobe in autistic patients.
PI: Sudhir Gupta, MD, PhD, Immunologist, University of California, Irvine A double blind, randomized study of IVIG treatment in autistic patients will indicate its possible efficacy as a treatment for some autistic children.
Autism Genetic Resource Exchange: CAN has established the world’s first collaborative gene bank for autism. While this is not a research project itself, it is an invaluable resource that will make the DNA of hundreds of multiplex families (families with more than one member affected by autism) available to an unlimited number of scientists across the country in a timely and efficient manner. Until now, the extreme difficulties and costs associated with enrolling multiplex families, as well as the unwillingness of scientists to share their resources, has resulted in a very slow rate of progression in the field genetic research. This is unacceptable as new tools and advances in science are making progress in this area more possible than ever. CAN believes that this resource will help to bring new scientists into the field and will motive those already working in autism to move forward at a more accelerated pace. AGRE has already succeeded in promoting collaboration among three of the five major groups currently doing genetic research, and hopes to expand that number.
While advances like these are exciting, there is still much work to be done.
Leaders in the field agree that autism will yield to science — with a coordinated effort and sustained funding. Organizations like CAN are faced with overcoming an almost 40 year lapse in scientific advancement in the field of autism. During that time there was no national organization exclusively, or even actively engaged in promoting and funding biological research in autism.
In working toward it’s goals, CAN actively promotes and welcomes collaboration, particularly among those also dedicated to autism research. So much still needs to be done, and the more individuals and organizations willing to dedicate themselves to this important cause, the better.
In the past, the autism community has been weakened from within by disagreements between various groups over issues such as aversives, inclusion, diagnostics etc. But there is so much more on which we all agree — most importantly, that we must work for a better life for people with autism. If organizations like CAN, ASA, ARI, NAAR, AIA and DDR can work together there is no end to what could be accomplished.