Non-Profit Neurologic Disease Support and Research Organizations
A partial list of support and research organizations who have participated at past CNS meetings and draw on the support and expertise of CNS members.
Autism Society of America
The mission of the Autism Society of America is to promote lifelong access and opportunity for all individuals within the autism spectrum, and their families, to be fully participating, included members of their community. Education, advocacy at state and federal levels, active public awareness and the promotion of research form the cornerstones of ASA’s efforts to carry forth its mission.
Batten Disease Support and Research Association (BDSRA)
Batten’s Disease (Neuronal Ceroid Lipofuscinoses) is an inherited, degenerative neurological disease that may affect persons of any age, but primarily affects infants, toddlers and school age children, beginning unexpectedly and leading to a progressive loss of brain function that later destroys bodily functions, eventually leaving the victim totally helpless. BDSRA was founded in 1986 and offers a wide range of family services, including quarterly newsletter, medical referrals, three day annual conference, 18 state and regional chapters, sibling support group and parent mentoring program.
Carter Center for Brain Research and Holoprosencephaly and Related Malformations
Holoprosencephaly (HPE) is a birth defect that occurs during the first few weeks of intrauterine life. HPE is a disorder in which the fetal brain does not grow forward and divide as it is supposed to during early pregnancy (incomplete cleavage of the embryonic forebrain/failure of the prosencephalon to cleave into the cerebral and lateral hemispheres).
This brain malformation can range from mild to severe and is classified into four types. For more information go to the Carter Centers Website.
Cerebral Palsy Group
Cerebral Palsy Group is an online resource for anyone who has been affected by cerebral palsy, birth injuries, or brain injuries. Our team was created so we can provide answers and all types of assistance needed to help improve the quality of life for loved ones and family members with cerebral palsy.
Cerebral Palsy Guide
Cerebral Palsy Guide provides free educational materials, financial options and emotional support for those affected by cerebral palsy.
The Charlie Foundation
The Charlie Foundation was established in 1994 in order to raise awareness about the ketogenic diet as a treatment for childhood epilepsy. The modern success of the diet has led to new demands on the medical community. In order to meet these demands, the Charlie Foundation has expanded its priorities to include educational programs for dietitians and neurologists as well as support for clinicians and researchers working to perfect its administration and discover its mechanisms.
Epilepsy Foundation of America
The Epilepsy Foundation is a national, charitable organization, founded in 1968 as the Epilepsy Foundation of America. Includes eCommunities page with links to numerous on-line information and chat/support groups.
International Rett Syndrome Association
Washington, D.C.—The Boards of Directors of the Child Neurology Foundation recently announced the International Rett Syndrome Association (IRSA) as the inaugural recipient of the new Patient Advocacy Award of Merit for outstanding public leadership among patient groups representing children with neurologic illnesses. The award was made during the recent annual meeting of the Child Neurology Society in Washington, DC.
Over the last year, Child Neurologists funded by the IRSA have gained significant insight into Rett Syndrome, a progressive developmental brain disorder affecting 1:15,000 female births. The 18-year-old volunteer agency founded by the parents of children with this rare, life-altering disorder received widespread media attention for their advocacy efforts for increased funding before Congress last May. Among those providing compelling testimony was actress Julia Roberts, who earlier this year hosted and narrated the acclaimed documentary: Silent Angels, a nationally broadcast Discovery Health film.
“We are pleased to introduce this new award and to recognize this outstanding group of dedicated individuals for their efforts to link families affected by this tragic disease. The parents, physicians, and caregivers of the IRSA provide families the comfort and encouragement they deserve while ensuring that scientifically-sound information about this disorder is widely disseminated in a timely manner,” said Dr. Kenneth Swaiman, President of the Child Neurology Foundation of St. Paul, MN.
Dr. Swaiman praised the group for their internationally recognized patient database. “By establishing the MECP2 Variation (Rett Base) and Phenotype Databases, they have made it faster and easier for researchers to compare patients’ mutations with their clinical symptoms while providing exciting opportunities for the discovery of new treatments!”
Since the group’s founding by a small, but dedicated corps of parents in 1984, more than $35 million has been appropriated by Congress to the National Institute for Health for the in-depth study of the disease, including $2.33 million in promising seed grants.
Movement Disorder Society
The Movement Disorder Society is an international professional society of clinicians, scientists, and other healthcare professionals who are interested in Parkinson’s disease, related neurodegenerative and neurodevelopmental disorders, hyperkinetic Movement Disorders and abnormalities in muscle tone and motor control.
The object and mission of the Society is to advance the neurological sciences pertaining to Movement Disorders; to operate exclusively for scientific, scholarly and educational purposes; to encourage research; to provide forums, such as medical journals, scientific symposia and International Congresses, for sharing ideas and for advancing the related clinical and scientific disciplines; and to encourage interest and participation in the activities of the Society among healthcare and allied professionals and scientists; and to collaborate with other related professional and lay organizations.
RYR-1 myopathy (Ryanodine Related Myopathy) is the commonest cause of congenital myopathy. It is rare and often under-diagnosed. The RYR-1 Foundation (a 501©3 organization) was formed in 2014 to fill the needs of both patients and practitioners. Currently, there is no other organization that exists solely to advocate for and serve the needs of families and individuals affected with RYR-1 myopathy. Details are available on the foundation’s website: (www.ryr1.org).
A major mission of the RYR-1 Foundation is to support research leading to effective treatment or a cure for RYR-1 related diseases, including congenital myopathy, malignant hyperthermia, and exercise and heat induced myopathy (including rhabdomyolysis, exertional heat illness, and others).. In fulfillment of this mission, the RYR-1 Foundation makes grants to qualified investigators, under the guidance of a distinguished Scientific Advisory Board (www.ryr1.org/sab). Details of new grant opportunities are now available on the foundation’s website..
Recent progress in medical genetics has resulted in important new information on RYR-1 myopathy. The RYR-1 Foundation suggests that patients thought to have this or related disorders undergo genetic testing (genotyping), because such testing is now considered to be the most accurate method for making a precise diagnosis. The results can supplement, and, in some cases, replace less specific diagnoses provided by muscle biopsy (such as Central Core Disease, Centronuclear Myopathy, Myotubular Myopathy, and others)..
Due to the rarity of RYR-1 myopathy, individuals receiving this diagnosis can experience substantial anxiety and isolation. The RYR-1 Foundation serves as a resource for such patients and their families by offering Family Meetings, a Patient Registry, and information on clinical trials.
In addition, because many child neurologists have limited experience with RYR-1 myopathy, the Foundation provides useful information through resources on its website (www.ryr1.org), including the most relevant and current medical literature (www.ryr1.org/medical-literature). Further, the website provides a directory with contact information that identifies physicians who care for affected patients. Members of the Child Neurology Society who have interest in congenital myopathy, and who wish to be added to the list, should contact Nicole Wallace, Administrative Assistant at the RYR-1 Foundation (Nicole@ryr1.org).
The Sturge-Weber Foundation’s mission is “to improve the quality of life for individuals with Port Wine Stains, Sturge-Weber Syndrome, and Klippel-Trenaunay Syndrome.” Site includes overview of programs and activities for public and foundation members, including new forums and chat rooms with physicians attending on a scheduled basis.
Tourette Syndrome Association
Founded in 1972 in Bayside New York, TSA is the only national voluntary non-profit membership organization in this field. Our mission is to identify the cause of, find the cure for and control the effects of Tourette Syndrome. We offer resources and referrals to help people and their families cope with the problems that occur with TS. We raise public awareness and counter media stereotypes about TS. Our membership includes individuals, families, relatives, and medical and allied professionals working in the field.
Tuberous Sclerosis Alliance
TSAlliance is the leading organization for the funding of medical research related to TSC, including breakthrough discovery of TSC1 and TSC2 genes known to cause the disorder. TS Alliance was first established in 1974 as the National Tuberous Sclerosis Association (NTSA), which it remained titled until 2000. TS Alliance maintains original focus of four mothers of children with TSC who founded the organization “in order to provide fellowship, generate awareness, pursue more knowledge and provide hope to those who share the common bond of facing the daily challenges of TSC.” Expanded programs include the annual Manuel R. Gomez Professional Recognition Award (named after former CNS President and emeritus member of Mayo Medical School faculty, Manual R. Gomez, MD) which recognizes “creative or pioneering efforts that have appreciably improved either the understanding of the disease or the clinical care available for individuals with tuberous sclerosis.” Recipient of 2002 award was CNS member, E. Steve Roach, MD.