Pediatric Brain Foundation (CNS Foundation at the time) sponsored its first scientific workshop in 2002 with goal of developing a network of leading scientists to focus on finding treatments and cures for the more than 14 million children with brain disorders.
We invited a representative group of parents and their children to share their stories and ask questions directly to pediatric neurologists and representatives of the National Institute of Health—the government agency that funds scientific research. Most of the scientists had never before participated in a working session with treating clinical neurologists, let alone parents.
After a couple of parents described their emotionally taxing journey to find diagnoses, treatments and cures for their children, one scientist, struggling to find the right words, apologized, saying, “We have let you down.”
That day, our parent community helped put a real face on the need and the critical importance of expediting the scientific research. After the parents left the room, the scientists brainstormed and reached consensus on a number of ways they could work together to push the science forward.
With the dramatic success of its first workshop, Pediatric Brain Foundation made a commitment to continue to bring together leading scientists, treating physicians, parents as well as representatives of government, disease specific organizations, venture capitalists and pharmaceutical companies to engage in interactive workshops on expediting the discovery of cures and treatments.