We began as a small support group in the early 1980s, thanks to the efforts of social worker Becky Huntley from Good Samaritan Hospital in Puyallup who wanted to bring together adults with Spina Bifida and children with Spina Bifida and their parents. As we grew, we evolved into an official nonprofit organization and christened ourselves the Evergreen Spina Bifida Association (ESBA) composed of Washington and four surrounding states.
One of our earliest active members was an adult with Spina Bifida, Gloria Olson, who represented us at the national Spina Bifida Association of America (SBAA) conference for many years. She conducted a study of women with Spina Bifida which was published by SBAA. In her tenure as ESBA president, she secured numerous grants to help the organization grow.
Charity of Choice
In 2002 we received a large monetary donation as Safeway's Charity of Choice. We now had a large treasury but a comparatively small membership, located mainly in Seattle. At the same time we realized we were the only Spina Bifida-focused group in the Pacific Northwest; therefore, we contacted SBAA constituents throughout Washington, Oregon, Idaho, Montana and Alaska. We amassed a membership in all five states and began awarding our own grants to partners like Seattle Children's Hospital who would help fulfill our mission.
In 2008, we affiliated with SBAA (Spina Bifida Association of America, now SBA), based in Washington D.C., and had the opportunity to rebrand our organization in order to better serve our community in order to better serve our community as hyper-local focused organization, known as the Spina Bifida Association of Washington State. We held our first Walk-N-Roll in 2010 and continued events and support for our constituents, reaching 300 members strong.
Back to the Fundamentals
In 2014, in an effort to better serve the Spina Bifida community in our state, we again undertook a transformative rebranding effort that sought to realign our programs and services with the needs of our population and to recommit ourselves to our organizational mission. From this effort, our organization adopted the name by which it is known today: the Spina Bifida Advocates of Washington State, or SBAWS. We returned to our roots as a support group focusing on community-building, inclusion and awareness. We traditionally hold three major events per year: the Walk-N-Roll (an all-abilities, inclusive fundraiser event) and summer picnic in July, an educational summit in October to coincide with National Spina Bifida Awareness Month, and a holiday party each December. We also fund a Direct Aid Reimbursement Program, a financial aid program that assists individuals and families in need with up to $250 per year for Spina Bifida-related medical and living expenses not covered by insurance.
In 2019, we proudly held our 10th anniversary Walk-N-Roll for Spina Bifida. We have been advocating and providing resources to our community for the past forty years. As our organization grows and the need of our larger community also expands, we as an organization are now seeking funds to support our next big transformation - one that we believe will help fill the gaps in services and community building that many in our population currently experience.