In 1964, the first multidisciplinary spina bifida clinic in the region was opened by developmental pediatrician, Dr. Jack Rubinstein at Cincinnati Children’s Hospital Medical Center as a specialty clinic to treat the complex and often inter-related symptoms of patients with spina bifida. By 1970, a neurosurgeon, orthopedic surgeon, and another developmental pediatrician, had joined the medical team.

Several interested parents met with the clinic director, Dr. Sonya Oppenheimer, to conceive of a means to provide connection and support to families in the area. The Myelomeningocele Parent Association of Greater Cincinnati incorporated in July of 1972 with 13 Board Members to serve this function.

Just three years later, in 1975, the organization became a chapter of the newly organized, Spina Bifida Association of America (SBA) and changed its name to the Spina Bifida Association of Cincinnati (SBAC).

SBA called on chapters across the country to help coordinate the annual national spina bifida conference in their city, and in 1985, SBAC worked diligently to host one of the most successful national conferences to date, inviting Michael J. Fox and Mr. Rogers to speak, and using computers for the first time to streamline registration.

In 2001, our signature fundraiser, The Walk & Roll for Spina Bifida, was launched. It has taken place in late September every year since raising over $520,000 to date.

In the early 2000s, SBA announced new requirements for chapters to remain affiliated. These included paid staff, a dedicated office space, a phone line, and revenue sharing back to the national organization. In, 2007, SBAC met this challenge, evolving from its past 35 years as an all-volunteer, grassroots effort by hiring an Executive Director followed by the opening of the first office in Queensgate, Ohio in 2009.

The national spina bifida conference was again hosted in Cincinnati in 2010, with SBAC organizing accessible buses to the Reds Stadium for a game in the Riverboat deck and providing entertainment for the awards ceremony, city maps, and Busken’s smiley face cookies for all. Many local individuals received awards for their dedication to improving the quality of life for people with spina bifida at the conference.

SBAC disaffiliated from SBA to better serve local families and rebranded as The Spina Bifida Coalition of Cincinnati in 2012, retaining the original 501(c) 3 non-profit certification.

The pandemic proved a trial for the organization, as for everyone, and after a year of staff working remotely, the decision was made to close the office in Queensgate. Online services such as Quickbooks, Zoom, and OneDrive in addition to widespread cell phone use made it easy and cost-effective to continue the work of the organization from home.

Discovering in 2020 that 20% of the patients seen in the Spina Bifida Center at Cincinnati Children’s Hospital were traveling from West Virginia put some urgency around a long-standing desire to support families in underserved areas east of the existing service area. Discussions began with a task force to perform a needs assessment and look at the efficacy of expansion. A memorandum of understanding was drawn up and the service area of the organization was increased from 17 to 72 counties in March of 2021. In January of 2022, the name of the organization was updated to reflect the broader reach, dropping the “of Cincinnati” to become The Spina Bifida Coalition, Inc.

In early 2022, clinic staff at Cleveland Children’s Hospital reached out to SBC looking for connection and support for the families they saw in Northeast Ohio. Representatives from 4 area hospitals that provide care for patients with spina bifida and local family members engaged in a conversation, and SBC added another 33 counties to our service area in September of 2022 bringing the current service area to 105 counties.