For members of Congress and other policymakers, numbers matter.
Simply registering on our site puts you on the map* which allows you and the child you care about to be counted as members of our community—a community of supportive parents, family members, friends, scientists and physicians—all committed to accelerating the development of treatments and cures for children with neurological disorders.
Fourteen million children in the United States alone are living with any one of 600 devastating brain conditions. These children and their families are an invisible and neglected population. They remain invisible because of the stigma attached to children with brain disorders and the desire of impacted families to maintain their privacy.
They remain neglected because of insufficient funding for pediatric neurological research, resulting in inadequate physician knowledge and an orientation of most neurological research toward adult as opposed to pediatric conditions.
The lifetime cost of care and lost productivity for these children and their families is in the trillions of dollars. Yet, the amount of government and private funding for research to find potential cures and treatments for these children lags significantly behind that of most other patient populations. This is especially true for the estimated 60% of this population with no diagnosis and those with rare brain conditions.
Leading scientists and physicians agree that research on the pediatric brain is wholly lacking. Yet, this research is not only critical to finding cures and treatments for infants and children, but also for providing insights into solutions for the enormous and growing number of people suffering from adult brain diseases, such as Parkinson’s and dementia.
To address these issues, in early 2013, CNS Foundation convened leading pediatric neurological scientists and physicians as well as others in the field of neurological research and parent advocacy. As a result of these discussions, CNS Foundation launched the Mapping Project.
Increasing government and private sector funding for pediatric neurological research will require an effective and compelling nationwide campaign to educate funding decision makers and the public about the needs of this hidden and neglected population. Through the Mapping Project, we will make visible the number of impacted children across the United States and engage like-minded organizations, families as well as their extended network of caregivers and friends to play a critical role in this campaign.
*The Map that currently appears on our website is an illustration of the approximate geographic distribution of children suffering from brain disorders in the United States. We will use this graphic representation until we gather more accurate information from this Mapping Project.
CNS Foundation respects your privacy. We will not provide your personal information to any outside organization or company without your explicit consent.