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.
2009
CNF Advocacy Award of Merit Recipient
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.
Heartfelt thanks to members of the Child Neurology Society for all of the nominations they submitted and to each member of the Advocacy Committee for once again thoughtfully selecting this year’s Advocacy Award winner.
Eighth Annual CNF Advocacy Award of Merit
For over 30 years, the Dystonia Medical Research Foundation (DMRF) has been the most accomplished and influential organization for dystonia research and patient advocacy. The organization has earned a reputation in the research community for excellence and was chosen by the National Institutes of Neurological Disorders & Stroke as a model program for patient advocacy organizations.
The leadership of the DMRF believes that eradicating dystonia through more effective treatments and a cure is the most valuable service it can provide to the individuals who are affected. In the meantime, the organization recognizes that children and families living with dystonia need support now. The DMRF is the only dystonia organization that holds special meetings for affected children and families. The John H. Menkes Children & Family Dystonia Symposium took place August 14-16, 2009. These meetings attract families from throughout the country and abroad, newly diagnosed families, and families that have endured dystonia for years, even generations.
The DMRF’s contributions in science can be measured in the treatments that have been tested; the genes cloned, the application of RNA interference technology to stop the effects of mutant proteins, and the discovery of new biomarkers. Under the organization’s constant prodding, the field is evolving quickly.
The DMRF has given the dystonia community a voice in Washington, DC. Action by Dystonia Advocacy Coalition representatives turned the tide against regulation change that would restrict patient access to one of the most effective dystonia treatments. The recent passing of the Genetic Information Non-Discrimination Act is a special victory of the dystonia community because it was one of the core concerns around which the advocacy program was formed over a decade ago.
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.
