About ASAP

About ASAP

About ASAP width=

About ASAP

The 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.

 

RESEARCH

ASAP is the leading organization in the fight against Chiari and syringomyelia. We have proudly sponsored $4 million for independent research grants and neurosurgical fellowships to residents wishing to conduct research or receive specialized training. Our research has transformed patient care, leading to significant advancements like identifying a genetic component to CM and enabling a larger NIH-funded study to identify related genes. ASAP’s Marcy Speer Research Memorial Fund provides continual genetics research in partnership with Duke University. Our $220,000 Outcome Study provided groundbreaking efforts in examining surgical outcomes for syringomyelia patients across 12 facilities.

Our research is on-going.

ASAP solicits grants and fellowships on a regular basis. We typically have 1-4 studies underway during the year. See our Research Grant Guidelines for application requirements.

Learn more here

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. Our Medical Advisory Board helps publish educational materials, including webcasts on related topics and disorders. One of ASAP’s leading education and support programs is the Chiari & Syringomyelia Conference held annually. The four-day event brings together leading physicians and researchers, families, patients and allied health care professionals for a unique opportunity to learn and exchange ideas.

Invaluable presentations are available to you.

Conference speakers and topics are carefully curated to examine a variety of interests. Presentations by our renowned guests facilitate the spread of invaluable medical knowledge to patients and doctors.

View Videos Here

SUPPORT

ASAP supports families and caregivers in a variety of ways, including helping people locate support groups in their area, organizing virtual support groups and offering networking opportunities. A favorite amongst ASAP members is the annual conference, located in a different city each year. 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.

You can help.

Together we can accomplish great things. “LEARN” how to champion your own fundraiser or join our national team of volunteers to learn how you can start a support group or other ways to help us fulfill our mission.

Find support here

Partnering Experts

The ASAP Medical Advisory Board and Research Committee are comprised of internationally-renowned leaders in neurosurgery and related fields. They are dedicated to guiding ASAP programs and research in order to improve the lives of those affected by Chiari malformation, syringomyelia and related disorders.

Learn more about our Advisory Boards.

Financial Reports

We are a Gold-level GuideStar Exchange participant, demonstrating its commitment to transparency. View our audited financial statements: