[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]
Cure Autism Now working towards results? Or is it just holding interesting meetings that do not really go anywhere? This was the question Dr. Marnin Kligfeld, parent of an autistic child, brought with him as he observed a session during the recent Cure Autism Now weekend of meetings in Santa Monica, California.
Leading scientists, researchers, advisors and supporters from across the country gathered in February for the annual meeting of the organization Scientific Advisory Board, as well a meeting of the steering committee of Cure Autism Now Autism Genetic Exchange Resource (AGRE). Dr. Kligfeld came away very impressed and hopeful. These people are on the forefront of finding a cure for our kids, he said, and my impression is that they are working in a very focused, very intense and very honest manner towards results.
The focus on the first part of the weekend was a gathering of Cure Autism Now esteemed Scientific Advisory Board (SAB). For an entire day, the board reviewed the many applications for grants to be given in 2001 by Cure Autism Now for original research in the field. A total of $800,000 was awarded to researchers, of which $640,000 is for pilot projects and $160,000 for young investigator awards. An additional $2 million will be used to fund requests for proposals and contracts contracts investigating the role of mercury in autism, a Gastro-intestinal retrospective, a communication tool device, neural retraining, and urinalysis.
A Genius Award and two awards for Innovative Technology in the field of autism were also allocated. John Wilson, a new Cure Autism Now board member, sat in on the deliberations of the Scientific Advisory Board as they reviewed the grant applications. I thought the process by which the review committee was evaluating the projects was very enlightening, he said, and although I found each of the proposals intriguing, I thought the quality of the dialogue was most impressive, with scientists bringing various points of view from their particular fields of expertise. He particularly noted the balance between scientific excellence and the ultimate pragmatism of the various research proposals discussed.
Mr. Wilson noticed that during the deliberations, Cure Autism Now co-founder Portia Iversen often asked questions like, What difference will it make when we get the answer to this research question? Is it going to be helpful for people dealing with the symptoms,treatment and cure of autism? Wilson observed that this is the perspective a parent brings, and the collaborative nature of Cure Autism Now’ operation was one of the principal reasons he became involved in the organization. The great thing about Cure Autism Now is that you have not only the involvement of some of the best scientists in the world, but also the passion of the parents and families. It’s a very potent combination.
Saturday morning of the weekend’s meetings saw public presentations from four leading scientists working in the field of autism. The speakers had been chosen to focus on four separate but interrelated areas: genetics, biological markers, neuroimaging, and neurobehavioral development. Of particular interest to Cure Autism Now supporters was the opening presentation by the Director of the Columbia GenomeCenter, Dr. T. Conrad Gilliam, who has been working with samples from the Autism Genetic Resource Exchange established by Cure Autism Now. Dr. Gilliam’s results to date confirm other research on autism candidate genes, as well as identifying new implications on chromosomes 5 and 19. His presentation, along with the others by Dr. Judith Grether, Stephen Dager, M.D., and Dr. Michael Merzenich, highlighted the need for collaborative research between the various scientific communities.
Commenting on the presentations from the view point of a grandparent of an autistic child, Dr. Gerald Leve, an endocrinologist from Raleigh, North Carolina said that the morning had given him encouragement. If I saw nothing being done, the feeling of hopelessness would be overwhelming, he said. But when I see the caliber of professional concern, interest, and achievement we’ve seen today, it makes me feel hope for my grandson Jonathan as well as all the other children who may eventually benefit from what’s being discovered now.
The latter part of the weekend was devoted to a meeting of the Steering Committee of the Autism Genetic Resource Exchange (AGRE) established by Cure Autism Now. Opening the meeting, chairman Dr. Dan Greschwind of the UCLA School of Medicine reminded the group that two years ago the question was; How do we do this?, in reference to establishing a cooperative gene bank for autism research. Co-founder Jonathan Shestack challenged the group with the present question, How do we take this incredible resource and grow its usefulness?
A significant portion of the time was devoted to the brainstorming of ideas to answer this question. The meeting continued with reports on the high level of work being done recruiting families, and obtaining genetic materials and data for the bank. It was reported that many researchers are already using the resources of AGRE in the search for candidate genes and other autism related projects. Dr. Greschwind noted that People in the community are impressed with the standards and the rapidity of our collection of samples. The key was sending highly trained staff out into the homes of multiplex families.
A highlight of the AGRE meeting was a detailed scientific presentation by Dr. Rudolph Tanzi, Director of the Genetics and Aging Unit of Massachusetts General Hospital. Dr. Tanzi has been a key figure in the discovery of genes associated with Alzheimer’s Disease, and his presentation focused on current scientific strategies being used to solve complex disorders like autism. Dr. Edwin H. Cook Jr., Director of the Laboratory of Developmental Neuroscience at the University of Chicago summed up the proceedings by saying, AGRE is at an exciting place. It’s reaching the point of having one of the largest, if not the largest sample of two or more children with autism. What we’ve been hearing today is about the quality of the assessment, which is equal to and in some ways surpasses some of the other assessments. This will be particularly useful to investigators as they try to look at connections between different children with autism and different genes. I think it will really help unravel the story.