The Spina Bifida Association of New England (SBAGreater NE) is dedicated to the prevention of Spina Bifida and to enhancing the lives of all affected.
The SBAGreater NE is a nonprofit 501(c)3 corporation founded in 1971 by a group of concerned parents of children with Spina Bifida. The founding mission was “Self-help and information decimation [sic] for the betterment of birth-defect children and the family unit”. In 1975 the name was changed name to Massachusetts Spina Bifida Association (MSBA) and the group became a chapter of SBA. In the early years the organization was a parent support group providing a Holiday Party, newsletter and regional representatives to lead local events. Assistance was aimed at Easter Seals Camp, Brace Fund and Wheelchair sports.
In the mid to late 1990’s MSBA there was a campership program, periodic newsletters and small holiday party. The Spina Bifida community was held together through the Children’s, particularly Mary Jo Dunleavy, RN, Coordinator of the Myelo Clinic at Children’s Boston connected new families, encouraged participation in MSBA and attendance at the Annual SBA Conference.
In 2008 MSBA signed an Affiliation Agreement with SBA and the name was changed to The Spina Bifida Association of Massachusetts (SBAGreater NE). Currently SBAGreater NE employs a part time, Executive Director and a part time Operations Associate. Much of what is accomplished by SBAGreater NE continues to be organized through the SBAGreater NE Board of Directors and the volunteer base.
What we do?
The SBAGreater NE provides educational and social events for parents of young children, tweens( ages 7-12), teens (ages 13-16) and youth and adults (17+); outreach efforts to medical offices, Spina Bifida clinics, participation in public awareness events to educate the community about many important subjects like folic acid; financial benefits to SBAGreater NE constituents, including an annual financial benefit, 6 SBA Conference Scholarships and the Mary Jo Dunleavy Conference Scholarship to support a constituent or family in attending the annual SBA Conference; the Jean Driscoll Award for an individual with Spina Bifida and fundraising and awareness with Team SBAGreater NE participation in the Boston Marathon and Falmouth Road Race and the annual Walk-N-Roll.
Who we serve?
The SBAGreater NE serves individuals and families living with Spina Bifida in Massachusetts, Maine, New Hampshire and Vermont. We serve individuals, prenatal through the life span, families and caregivers. In addition SBAGreater NE delivers outreach to all women of child bearing year and their partners regarding the benefits of folic acid.