When my son was diagnosed with tuberous sclerosis complex (TSC) in 2008, I felt as though my family and I had been thrown "through the looking glass" into a strange and frightening world. I joined the Tuberous Sclerosis Alliance, the only national advocacy group for TSC in the United States, to get support and help in finding treatment options. I became a volunteer for the group not only to help other families, but also to attempt to exert some control over a world that now seemed to be turned upside down. I wanted to take steps to try to understand and defeat this disease.
I first learned of the Tuberous Sclerosis Complex Research Program (TSCRP) through my government advocacy work with the Tuberous Sclerosis Alliance. Adults with TSC, parents of children with TSC, and other volunteers come together once a year to advocate in Congress for medical research funding. We share with Congressional offices our personal TSC stories and the great advances that have been made in TSC research in the past several years. Much of this progress has come from TSCRP-funded research. So when a consumer reviewer for the TSCRP suggested that I apply to become a reviewer, I jumped at the chance to be a part of this valuable program. While my primary job is that of a homeschooling mother to two teenage boys, my background of a biology degree and part-time work as a clinical research coordinator led me to believe that I could make a unique contribution in this role.
I was very proud to go back to the Congressional offices this year and tell them of my consumer reviewer experience with the TSCRP. I could testify to the excellent quality of grant proposals submitted to the panel and the highly competitive process to fund the very best. I feel honored to be given a chance to represent the TSC community on the selection panels to help choose the research that could have the greatest impact on our community. As a parent and volunteer, I have seen the end results of the research in the form of new treatments for the disease that have made significant impacts on the lives of those who suffer. My experience as a consumer reviewer has been educational, empowering, and very fulfilling.