SPINA BIFIDA ASSOCIATION OF GREATER NEW ENGLAND INC
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Mission Statement
The mission of Spina Bifida Association of Greater New England is to build a better and brighter future for all those impacted by Spina Bifida. We envision a world where everyone with Spina Bifida is accepted and thrives. Our tools are support, education and advocacy.
About This Cause
We support people living in all 6 New England states with Spina Bifida. SBAGNE does this by building a strong community of support. We provide education and support to individuals as they move toward fulfilling and independent lives. Our vision is to promote access and change within society and respond to the needs of people of all ages living with spina bifida. 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 a pregnancy and impacts approximately 6.2 % of the population. People with spina bifida have multiple medical needs including: • walking and mobility issues from paralysis • bowel and bladder problems • water on the brain (hydrocephalus) • latex allergies and pressure sores There is no cure. Treatments may ameliorate symptoms, but any paralysis will be lifelong. Many have dozens of surgeries – orthopedic, urological and neurological – over a lifetime. Spina Bifida it is not one condition, but multiple conditions that affect the mind, body and spirit. Our programs for children and adults with spina bifida include: • Educational and social activities for individuals, families and medical professionals. • Teen Empowerment programming for young teens 11 - 18; • Parent-to-Parent Connections – offering parents opportunities to share and support each other in raising children with the complex medical needs that come with Spina Bifida. • “Born to Be Amazing” – reaching out to provide support to parents of newborns with Spina Bifida through Children’s Hospital and other medical centers. • Financial benefit awards through our Empowerment Fund and our annual Jean Driscoll “Dream Big” Award providing scholarship assistance for college or job preparation. • Outreach efforts to medical offices, Spina Bifida clinics and participation in public awareness events; • Team Building through fundraising with Team SBAGNE participation in the Falmouth Road Race and our annual Walk N Roll for Spina Bifida.