Cure Autism Now | The Autism Genetic Resource Exchange | August 1996

[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]

The Autism Genetic Resource Exchange

A time for work, a time for hope, a time for gathering together

Some little known facts about autism:

Autism is not rare. Autism is the third most common developmental disorder. Two out of every 1000 children born in the US will be on the autistic spectrum. Autism currently effects 400,00 people in the United States.

The current amount being spent per year by the National Institutes of Health for biomedical research in autism is less than 5 million dollars per year. That is $12 per year, per person.

Though some children will make huge strides through early intervention, most of the children suffering with autism today will never grow up to go to college, marry, or have children. More than half will never be able to speak and the majority will never live independently.

Unless… we grasp the opportunity before us. In the past five years there have been unprecedented advances in genetics, neurochemistry, neuroimagining and molecular biology. Almost none of this promising new technology has been applied to autism research. We believe that if we bring these new techniques to focus on the puzzle of autism, progress is inevitable. We must not lose another generation of children.

Why is genetic research so important?

Autism is probably not one single disease, but a syndrome with several possible causes. Genetic research will help identify the main subgroups enabling more intensive study. 

Once even one single gene is found, (scientists believe there will probably be several), the power of mainstream science will immediately become focused on autism as never before.

Genes encode proteins that have specific roles in all the cells of the body. The discovery of one or more genes in autism will help us understand what proteins are involved in the risk of developing autism. This knowledge will open the door to research aimed at developing treatments, and a cure. 

What is holding things up?

The two biggest obstacles are a lack of funding, a lack of quality controlled patient samples for wide distribution and study within the scientific community.

What is the current state of autism genetic research: A poll of the major groups doing autism genetic research in the United States has revealed a serious shortage of multiplex family samples and an unwillingness to pool what samples do exist. In addition, samples are being collected at an extremely slow pace. Given the potential for major findings, the progress has been shockingly slow.

What can be done to speed up research and help these children now?

The Autism Genetic Resource Exchange (AGRE)

AGRE is a resource bank created by parents and researchers to supply genetic samples from multiplex families (more than one member affected by autism) to ALL qualified researchers. AGRE’s goal is to “immortalize” 100 multiplex samples within one year. Immortalizing the cell line is a laboratory process in which the blood sample becomes an endlessly replenishable resource, thus allowing as many researchers as possible access to the genetic material. AGRE will use this valuable resource to support current researchers, encourage prominant scientists in related fields to investigate autism and to encourage talented new researchers to enter the field.

The cost of gathering samples from 100 families, processing them, and readying them for distribution will be approximately $700,000. This is a substantial amount of money. Looking at this figure, it’s painfully clear how little research is possible if each interested scientist is forced to start from scratch and recruit and immortalize their own hundred or more families. AGRE hopes to make all that unnecessary. Currently, there are only three major research groups in the United States looking at the genetics of autism. Next year we hope there will be thirty —using the genetic material of the Autism Genetic Resource Exchange.

CAN, the Cure Autism Now Foundation, is in a unique position to recruit families for a collaborative gene bank. Can has earned the respect and trust of parents, and through a series of conferences and outreach programs for families and physicians CAN has amassed a list of over 6,000 supporters. These include hundreds of multiplex families as well as a large number of clinicians who are committed to recruiting families for the collaborative genetic resource. AGRE hopes to have one hundred families immortalized within the year, and plans to start shipping samples to researchers as soon as the first twenty five families are banked. We believe that the successful implementation of AGRE will accelerate progress in autism research by a decade.

We are very excited to be in a position to make such a critical difference in the pace of autism research. We are especially grateful to all the families who have made this monumental stride forward possible, by donating their family’s time, energy and blood samples. Without their help, AGRE could not exist. We also want to thank the generous financial donors without whose support the creation of this valuable resource would not be possible. And lastly a deeply felt thanks to the researchers who like the families and the financial donors, believe in their hearts, as we do, that there can and will be a better future for our children.

The Autism Genetic Resource Exchange is sponsored by CAN, the Cure Autism Now Foundation, An organization formed by parents and researchers, dedicated to finding biological treatment and a cure for autism.

About CAN

CAN (Cure Autism Now) is an organization founded by parents dedicated to finding effective biological treatments and a cure for autism.

About CAN / General Information

We have come a long way since Bruno Bettelheim proclaimed that autistic children were the result of “refrigerator mothers.” We now know that autism is a medical disorder, and not a rare one. Autism:

• Affects 20 children per 10,000.
• Is more frequent than childhood cancer, multiple sclerosis, or cystic fibrosis.
• Receives less than 5% of the funding of these other diseases.

CAN believes that we can’t wait for someone else to decide that these children deserve help. The pace of scientific progress can and must be accelerated.

CAN is dedicated to funding research with direct clinical implications for treatment. To reach its objectives, CAN will rely on three major strategies:

• Establishment of an aggressive and collaborative scientific work group made up of top researchers and clinicians.
• Collaboration between researchers and an active parent board.
• Prompt review and funding of practically oriented research

The CAN Scientific Work Group

  • The CAN scientific work group is a task force of innovative, open-minded and committed scientists and clinicians. These scientists are involved in cutting edge research in the fields of immunology, neurology, neuroimaging, genetis, biochemistry, metabolics, orthomolecular medicine, and pharmacology. Many have already made significant contributions to the biological understanding of autism. The clinicians all have active autism practices where they have direct first-hand exposure to autistic children. Moreover, many of those in the scientific work group are also the parents of autistic children. These professionals will review research proposals as well as work together to suggest further research projects leading toward direct clinical applications. All researchers receiving funds from CAN will be strongly encouraged to share their methods and findings with others in the field. 

The CAN International Parent Board

The CAN international parent board will monitor research efforts from around the world, circulate the latest findings among the scientific work group, and coordinate fundraising. CAN believes that it is the interaction between concerned parents and researchers in the field that will help keep motivation high and the pace of progress rapid. We must never forget that this is not an abstract problem. This is a real problem with a human face.

Because our children must not wait any longer, CAN officials and the scientific work group will process all grant applications within a month of submission. This will be accomplished using CAN’s private internet forum to rapidly review research proposals and make recommendations.

In recent years, a number of promising biochemical clues have emerged on the autism research front. Pieces of the puzzle are before us, but little has been done to fit the pieces together and develop effective medical treatments. With your help, Cure Autism Now will change that. The answers may be momentarily out of reach, but they are within our grasp.

The CAN Honorary Board

• Maya Angelou – Author, I Know Why the Caged Bird Sings and other books
• Donna Williams – Author, Nobody Nowhere and other books
• Rick Rollens – Secretary of the Senate, State of California (parent)
• Doreen Granpeesheh, Ph.D. – Center for Autism & Related Disorders, Los Angeles, California
• The Honorable Jackie Goldberg – Hollywood City Council District 13

The CAN Board Of Directors

• Portia E. Iversen – President (parent)
• Ricki Robinson, MD – Autism Initiative Task Force Chair (parent)
• Jonathan Shestack – Treasurer (parent)
• Ellen Bolte – Secretary (parent)
• Jerome Shestack, Esq – President Elect American Bar Association, Past Chair American Bar Association Commission on the Mentally Disabled (grandparent)

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