Spina Bifida Association of Greater New England

Mission Statement

The mission of the Spina Bifida Association of Greater New England (“SBAGNE”) is to build a better and brighter future for all those impacted by Spina Bifida. We envision a world in which everyone impacted by Spina Bifida is accepted and thrives. We are the ONLY voluntary health organization in New England supporting the estimated 4,400 individuals living with Spina Bifida and their families.

Connections are at the core of all of our programming. We connect our members to each other through social programs such as Teen Empowerment Weekend, Family Camp Weekend, Adult Empowerment Weekend, Meet Your Neighbor Events, Summer Picnics, and Holiday Parties. We connect our members to the medical community through our Regional Education Conference, webinars, and ongoing efforts to develop a database of medical providers willing to treat adults with Spina Bifida. We connect our members to the broader community through referral to peer disability resources, advocating in each state for recognition by the Governor, and nationwide virtual programs such as Book Club and our Strut and Stroll Fashion Show.

Spina Bifida is the most common permanently disabling birth defect. It occurs when the spine and spinal cord do not
form properly within the first 30 days of pregnancy. There is no cure. Individuals with Spina Bifida have multiple medical
needs including: walking and mobility issues from paralysis; bowel and bladder incontinence; Hydrocephalus; latex
allergies and pressure sores; executive functioning deficits; and difficulty finding medical care as adults. Many
individuals have dozens of surgeries – orthopedic, urological and neurological – throughout their lifetime. Because of
this, they can encounter social/emotional and mental health issues in addition to physical limitations. We endeavor to support, connect, and empower our members as they strive to live their best lives.