Chiari malformations (CMs) are structural defects in the cerebellum, the part of the brain that controls balance. When the indented bony space at the lower rear of the skull is smaller than normal, the cerebellum and brainstem can be pushed downward. The resulting pressure on the cerebellum can block the flow of cerebrospinal fluid (the liquid that surrounds and protects the brain and spinal cord) and can cause a range of symptoms including dizziness, muscle weakness, numbness, vision problems, headache, and problems with balance and coordination. There are three primary types of CM. The most common is Type I, which may not cause symptoms and is often found by accident during an examination for another condition. Type II (also called Arnold-Chiari malformation) is usually accompanied by a myelomeningocele-a form of spina bifida that occurs when the spinal canal and backbone do not close before birth, causing the spinal cord to protrude through an opening in the back. This can cause partial or complete paralysis below the spinal opening. Type III is the most serious form of CM, and causes severe neurological defects. Other conditions sometimes associated with CM include hydrocephalus, syringomyelia, and spinal curvature. Medications may ease certain symptoms, such as pain. Surgery is the only treatment available to correct functional disturbances or halt the progression of damage to the central nervous system. More than one surgery may be needed to treat the condition. Many people with Type I CM are asymptomatic and do not know they have the condition. Many patients with the more severe types of CM and have surgery see a reduction in their symptoms and/or prolonged periods of relative stability, although paralysis is generally permanent. The NINDS supports research on disorders of the brain and nervous system such as Chiari malformations. The goals of this research are to increase scientific understanding of these disorders and to find ways to prevent, treat, and, ultimately, cure them.  Current NINDS-funded research includes studies to better understand the genetic factors responsible for the malformation, and  factors that influence the development, progression, and relief of symptoms among patients with syringomyelia, including those with Chiari I malformations. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search&term=arnold+chiari+malformation+AND+type+I[text]+AND+human[mh]+AND+english[la]&db=PubMed&orig_db=PubMed&filters=on&pmfilter_EDatLimit=5+Years http://www.nlm.nih.gov/medlineplus/neuraltubedefects.html 1 http://clinicaltrials.gov/ct2/results?term= /disorders/chiari/pubs_chiari.htm /disorders/chiari/xml_chiari.xml xml_chiari.xml Arnold-Chiari Malformation V41 March of Dimes

1275 Mamaroneck Avenue

White Plains NY 10605 askus@marchofdimes.com http://www.marchofdimes.com 914-997-4488 888-MODIMES (663-4637) 914-428-8203 Works to improve the health of babies by preventing birth defects and infant mortality through programs of research, community services, education, and advocacy. V91 National Organization for Rare Disorders (NORD)

55 Kenosia Avenue

Danbury CT 06810 orphan@rarediseases.org http://www.rarediseases.org 203-744-0100 Voice Mail 800-999-NORD (6673) 203-798-2291 Federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. Committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. V213 Spina Bifida Association

4590 MacArthur Blvd. NW

Suite 250 Washington DC 20007-4266 sbaa@sbaa.org http://www.spinabifidaassociation.org 202-944-3285 800-621-3141 202-944-3295 Non-profit association that provides information and referrals through a clearinghouse and toll-free number. Promotes research into the causes, treatment and prevention of Spina Bifida; conducts public awareness campaigns; and encourages socialization and training for people with Spina Bifida. V221 American Syringomyelia & Chiari Alliance Project (ASAP)

P.O. Box 1586

Longview TX 75606-1586 info@asap.org http://www.asap.org 903-236-7079 800-ASAP-282 (272-7282) 903-757-7456 Non-profit organization that works to improve the lives of people with syringomyelia, Chiari malformations, and related disorders. Publishes a newsletter and offers other written information, videotapes, an annual conference, and other services. V916 Chiari & Syringomyelia Foundation

29 Crest Loop

Staten Island NY 10312 info@CSFinfo.org http://www.csfinfo.org 718-966-2593 718-966-2593 (Call First) Nonprofit organization committed to disseminating accurate and current information about treatments for and best practices surrounding the management of Chiari malformation, syringomyelia & related cerebrospinal fluid disorders.