History - Spina Bifida Association of Western Pennsylvania

Our History

The SBAWP is a non-profit 501(c)(3) committed to improving the quality of life for people with disabilities, especially those with spina bifida and their families, by providing a continuum of direct services, education and advocacy. Spina bifida is one of the most devastating of all birth defects affecting nearly one out of every 1,000 newborns in the U.S. It results from the failure of the spine to close properly during the first month of pregnancy exposing the nerves to damage or infection. At birth, the most obvious signs of spina bifida are either a cyst or indentation on the baby’s spine. Surgery will close any opening; however, damaged nerves cannot be repaired. Individuals with this disability often suffer from loss of sensation in the lower extremities; bowel and bladder incontinence; leg and foot deformities and learning disabilities such as attention deficit hyperactivity disorder (ADHD) or other learning difficulties, such as hand-eye coordination problems.

1969

The SBAWP was established in 1969 by a group of parents representing the first infant survivors of spina bifida and hydrocephalous in significant number. The parents focused on supporting one another and advocating for quality health care. Since its inception, the association has successfully focused on addressing the needs of individuals living with spina bifida and other related disabilities as they age and progress through life’s developmental milestones. Related disabilities include Cerebral Palsy, Traumatic Brain Injury and Asperger’s Syndrome all of which include both physical and cognitive disabilities similar to spina bifida.

1970s-1980s

By working in close partnership with individuals and families, the SBAWP has gained a clear understanding of the risk factors and needs of those served. Successful advocacy efforts during the 1970’s and 1980’s led to the creation of the first multidisciplinary medical clinic for individuals with spina bifida. With the foundation of health care in place, the SBAWP focused on developing the nation’s only continuum of life enriching direct service programs for children, teens and adults with spina bifida and other related disabilities.

1990s

Throughout the 1990’s the SBAWP simultaneously focused on program development and creation of a world class facility on 32 acres including nature trails, tent camping area, outdoor amphitheater, playing field, sports court, adaptive, par-3 golf course (the only one in western Pennsylvania), fully accessible, year-round buildings, including a 48-bed lodge; spacious activity center with fireplace, air hockey and pool tables, media center and kitchen; creative arts building; indoor aquatic center with water heated to 89 degrees and a dining hall for 100 with full commercial kitchen and catering services. With the SBAWP’s ability to deliver high quality grassroots programs and services threatened by the fiscal burden of the facility, the association engaged in a critical strategic planning process in 1994.

1998-2000

The pinnacle accomplishment of this strategic plan was achieved in 1998 with the establishment of the Woodlands Foundation, Inc. (WFI) and the completion of a capital campaign for the Woodlands facility. The SBAWP effectively transitioned the facility management from the SBAWP to the WFI between 1998 and 2000. Since the transition, the SBAWP has been successful in strengthening the Association’s financial position in order to return to its roots and focus more heavily on grassroots programs and service delivery.

Today

Current SBAWP programs consist of the Summer Developmental Camping Program, the Year-Round Weekend Retreat Program, the Gatehouse Residential/Vocational Training Program, the Wellness Program, the Community-Based Services for Adults Program and the Family-School Partnership Program. The SBAWP serves over 600 families in 28 counties in Western Pennsylvania. Within this region, it is estimated that several hundred additional, unidentified persons with spina bifida require, but are unaware of, the services of the SBAWP.The SBAWP was established in 1969 by a group of parents representing the first infant survivors of spina bifida and hydrocephalous in significant number. The parents focused on supporting one another and advocating for quality health care. Since its inception, the association has successfully focused on addressing the needs of individuals living with spina bifida and other related disabilities as they age and progress through life’s developmental milestones. Related disabilities include Cerebral Palsy, Traumatic Brain Injury and Asperger’s Syndrome all of which include both physical and cognitive disabilities similar to spina bifida.

Through all of our programs and services, the SBAWP has maintained strong and active relationships with all of our clients, family members, healthcare providers, community educators and employers. The unrivaled level of care the association provides is linked to the relationships that SBAWP staff has built with each client, client family and key community stakeholders over the years. It is the direct input our clients, client families and the community in which they live that is the driving force behind the creation and implementation of all of SBAWP’s programs and services.