About Us

ASAP FacesThe American Syringomyelia & Chiari Alliance Project, Inc. (ASAP) is a non-profit, 501(c)(3) donor- supported organization founded in 1988 by Barbara and Don White. ASAP began as a grass roots organization in the White’s spare bedroom due to the frustration they encountered when Barbara was diagnosed with Chiari malformation and syringomyelia. Since then, ASAP has grown tremendously but our fundamental goals of research, education and support remain the same. This organization is a Gold-level GuideStar Exchange participant, demonstrating its commitment to transparency. Clicking on the Guide Star Logo will take you to our information where you can view current and past financial information about the organization.  Or click here to view audited financial statements.

ASAP Fact Sheet

ASAP works toward accomplishing its mission by funding research grants

Funding more than one million dollarsin research grants to date, ASAP is the leading organization in the fight against Chiari and syringomyelia. In addition to grants, ASAP also offers neurosurgical fellowships to residents wishing to conduct research or receive specialized training in the clinical management of patients with Chiari malformation and/or syringomyelia. Thanks to ASAP’s initiatives, patient care and evaluation has changed dramatically, and hereditary information is now available for patients and families. The genetic study, funded in 1998, led to the publication of literature which established a genetic component to the Chiari malformation, with or without syringomyelia. This led to a larger NIH funded research project, currently underway, which is working to identify gene(s) responsible for the Chiari malformation. ASAP’s Marcy Speer Research Memorial Fund also provides funding for these important efforts. Our commitment to vital research continues as we fund a ground breaking research study looking at patient outcomes after surgery. Referred to as The Outcome Study, this $220,000 two-year commitment will look prospectively at the outcome of patients with syringomyelia undergoing decompression surgery in 12 facilities nationwide. The goal of research is to gather data that can be used in a larger study that hopefully help identify the outcome of various surgical procedures on syrinx resolution.

ASAP works toward accomplishing its mission by providing education

ASAP works to educate and inform the public and health professionals on Chiari (CM), syringomyelia (SM) and related disorders. Our goals include increasing awareness, early identification of patients and a deeper understanding on the symptoms, causes, and management of the disorders. One of ASAP’s leading education and support program is the Chiari & Syringomyelia Conference held annually. The four day event brings together leading physicians and researchers, families and caregivers, patients and allied health care professionals for a unique opportunity to learn, share and exchange ideas. In addition, ASAP publishes written educational materials and provides DVD and telephone lectures on various topics of importance to the SM/CM community.

ASAP works toward accomplishing its mission by providing support

ASAP supports families and caregivers in a variety of ways including helping people locate support groups in their area, organizing virtual support groups, offering networking opportunities including a message board, listserv and chat room. Thanks to individuals working across the country ASAP is able to work toward fulfilling their mission: to improve the lives of persons affected by syringomyelia, Chiari malformation and related disorders until we find the cure.

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