The power of advocacy is many fold - first, it can stem the tide of helplessness that descends upon anyone who is faced with a devastating illness or disability and, second, it reminds the powers that be - the scientists, the government, the politicians, and big pharma, what exactly is at stake - precious human life and the quality of that life as it is lived by those who are affected and their families.
I can think of nothing more devastating than discovering that your child has a serious developmental disorder, except the news that there is no research going on into the disorder that has robbed your child of his future. That is the situation my husband, Jon Shestack, and I found ourselves in after our son Dov was diagnosed with autism at the age of 21 months. Despair gave way to disbelief as we learned that the National Institutes of Health (NIH) was only allocating about 5 million dollars a year to autism research. Research funding was almost nonexistent because autism was considered an emotional, rather than a neurological or biological, disorder, and incurable as well. And there was another reason why parents weren't raising money for research, lobbying Congress and working with the NIH - they were putting away all their expendable income toward the future care and support of their autistic child for whom they were told there could be no cure. Within a year we had decided to start a research foundation.
Once we decided to start the CAN Foundation I spent every waking hour poring over what little research existed and reading in related fields that studied the brain and behavior. I stocked up on medical school reference books and looked up every term I did not understand until I knew them all - or at least most of them. Thus, soon after founding the CAN foundation, we established the Autism Genetics Resource Exchange (AGRE), the first autism gene bank to provide DNA samples and clinical and diagnostic data to the entire scientific community. This was the most important project we ever undertook because it enabled researchers around the world both from within the field and from other related fields to embark on autism research. It was an expensive and daring undertaking that no individual scientist or laboratory could afford to take on alone. AGRE quickly became the largest sample collection in the world and, as time went on, it became apparent that it was going to take a huge number of samples to figure out autism.
The CAN Scientific Review Council, (SRC) was established in the third year of the organization's existence. Modeled after the NIMH Advisory Council, the SRC was made up of scientists and clinicians almost all of whom were also the parent or relative of a person with autism. After receiving the CAN Scientific Advisory Board's determination of the scientific merit of the proposed grants, the SRC was responsible for ensuring that the research was relevant and reflected the urgency of those affected by autism. Like the NIMH Advisory Council, the SRC also made the final decision about what grants would be funded. This system worked extraordinarily well toward bridging the longstanding schism between parents and the research community and ultimately toward the emergence of a mutual respect and healing after years of animosity between the two groups.
In 2007 the Department of Defense Office of Congressionally Directed Medical Research Programs (CDMRP) announced a new program that would focus on autism research. I was invited to serve on the Peer Review Panel for the Autism Spectrum Disorder Research Program (now called the Autism Research Program or ARP). The CDMRP has supported research in a number of disease-specific areas for many years and I was thrilled to learn that now autism research would take its place within the program. With a budget of 8 million dollars going directly to autism research in the first year, the CDMRP instantly became one of the most significant contributors to the advancement of the field.
I was honored to be chosen to serve as a "consumer reviewer" for the first round of the CDMRP-ARP grants. It was a familiar role for me, one I had filled as a member of the CAN SRC. The experience was intense, even grueling at times, and yet the extraordinarily high quality of the CDMRP grant review process provided a welcome example of the grant review process done right. In fact, it was by far the best organized and most ethical grant review I have ever participated in. I appreciated the excellent overall organization, the meticulous attention to detail, and the expediency of the process that the CDMRP had put into place. Clearly, a lot of thinking and experience had gone into the process.
The idea behind "Consumer Reviewers" is to have advocates (stakeholders) weigh in on the relevance of the grants being reviewed and, as such, we participated fully. It's incredibly important to have stakeholder participation in these grant reviews because even the very best science can sometimes be irrelevant in terms of the usefulness for those who are directly affected by the disorder.
I was impressed at how seriously confidentiality, ethics, and conflict of interest were taken - these issues were explained in detail and reviewers signed in and out when entering or leaving the room. Even the most seasoned researchers said they'd never experienced so rigorous a process in all their years of reviewing grants. I am glad I had the opportunity to take part in this exciting new funding program for autism research.
In addition to serving on public and private research boards, Portia is the author of the book Strange Son (Riverhead, 2007) about her son with autism who learned to communicate at age nine, she has also co-authored a number of research papers and has studied molecular biology and neuroscience to augment her life-experience knowledge of autism. Portia lives in Los Angeles with her husband, Jon Shestack, and their three children.