Corporate Advisory Board
The Child Neurology Foundation Advocacy Award of Merit was created in 2002 through the efforts of its Board of Directors and the Foundation’s Advocacy Committee. The award recognizes a patient support organization making outstanding achievements on behalf of patients and families with neurologic and developmental disorders.
Eligible patient support organizations must be a not-for-profit organization. Submitted nominations are reviewed by the membership of the Advocacy Committee of the Child Neurology Foundation. The committee votes to determine which organization to recommend to the CNF Board of Directors for confirmation.
The Child Neurology Foundation’s Advocacy Committee is charged with creating resources for families having children with neurologic conditions and providing information to attending child neurologists in order to facilitate more effective dialogue between families and their child neurologist.
Serving as a voice for our children has been at the center of our mission. The Advocacy Committee comprised of child neurologists, parents and advocacy organization leaders, is dedicated to providing parents with appropriate resources to care for their child with a neurologic disorder.
Nominated by Nancy L. Kuntz of the Ann & Robert H. Lurie Hospital of Chicago, the LGS Foundation is a non-profit organization dedicated to providing information about Lennox-Gastaut Syndrome while raising funds for research, services and support for individuals living with LGS and their families. The LGS Foundation is based in New York City and provides services and information to thousands of members across the world.
Nominated by Eric Kossoff, Johns Hopkins University, the Myasthenia Gravis Foundation of America (MGFA) serves patients, their families and caregivers through a network of chapters,support groups and programs. MGFA is committed to finding a cure for myasthenia gravis and closely related disorders, improving treatment options, and providing information and support to people with myasthenia gravis through research, education, community programs and advocacy.
Nominated by Dr. Max Witznitzer, CHADD (Children & Adults with Attention Deficit Disorder) continues to be the premier source for information on ADD/ADHD for families and professionals. CHADD collaborated with CDC for their world-class web sites, International conferences, community forums, Parent-to-Parent and Teacher-to-Teacher training programs, authored and distributed an ADHD Educator’s Manual to every public school, and publishes an award-winning magazine for members. Last year, CEO Ruth Hughes went above and beyond to bring attention to the nation-wide drug-shortage. Her efforts culminated in a series of senate hearings.
Nominated by Anne Howard, the Sturge-Weber Foundation (SWF) has been the foremost provider of information to families on Sturge-Weber disorder for over 25 years (1987). Some of their achievements include a comprehensive website, holding semi-annual conferences, offering referral capabilities, collaborative legislative efforts, and establishing “centers of excellence” in ten hospitals supply families with timely knowledge and resources. The Sturge-Weber Foundation maintains a free membership policy.
This year, the Advocacy Committee (comprised of child neurologists, parents and advocacy organization leaders) has elected to name two organizations to receive the Advocacy Award of Merit.
Nominated by Dr. E. Ann Yeh, the first award goes to the National Multiple Sclerosis Society which helps each person address the challenges of living with MS through its 50-state network of chapters. The Society helps people affected by MS by funding cutting-edge research, driving change through advocacy, facilitating professional education, and providing programs and services that help people with MS and their families move their lives forward. The Society partners with the healthcare community across the country to promote and enhance quality healthcare and has expended over $650 million to support 375 research projects around the world.
Nominated by Dr. Stephen Kinsman, the second award goes to the Sarah Jane Brain Foundation which seeks to create a model system of care for children and young adults suffering from all Pediatric Acquired Brain Injuries in order to advance our knowledge of the brain fifty years over the next five years! The Sarah Jane Brain Foundation developed the first-ever National Pediatric Acquired Brain Injury Plan (PABI) which outlines the creation of seamless, standardized, evidence-based system of care, universally accessible for all PABI children/young adults and their families regardless of where they live in the nation.
The National Urea Cycle Disorders Foundation (NUCDF) is a non-profit organization dedicated to the identification, treatment and cure of urea cycle disorders. NUCDF is a nationally-recognized resource of information and education for families and healthcare professionals.
NUCDF was formed in 1988 by a handful of parents whose children were affected. It is operated and supported by the volunteer efforts of families with children suffering from UCDs and is a supportive network of families, friends, and medical professionals.
Child Neurology Foundation
201 Chicago Avenue #200
Minneapolis, MN 55415