In 1988 Don and Barbara White officially founded the American Syringomyelia Alliance Project, Inc. A grassroots organization to spread awareness about a rare disorder that Barbara was diagnosed with several years earlier. It would be several more before she learned the cause of her Syringomyelia was Chiari malformation. At the time it was extremely difficult to find information about the disorders. It would be years before the internet and information they were able to find was costly. They wanted to locate others who shared Barbara’s journey and offer support as well as began saving to fund research.
Every May we celebrate Syringomyelia Awareness Month to honor their legacy. Members around the world work on various projects to spread awareness, education and offer support to others. Many states issue proclamation each year naming May Syringomyelia Awareness Month! Volunteers hold local events and others share their stories in publications and social media.
Syringomyelia has a variety of causes and the disorder affects everyone differently. Many are misdiagnosed with other disorders or diseases. To look at an individual with Syringomyelia, you might not even know the extreme symptoms they experience each day. Others may have no symptoms.
We hope that you will join us in May as we continue our mission to improve the lives of lives of persons affected by Syringomyelia, Chiari malformation and related disorders while we find the cure.