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.
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.