About the Nonprofit
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Our Mission: We will provide service, support and opportunities to develop the maximum potential of all individuals born with Spina Bifida and neural tube defects and their families; and to assure development of the best possible quality of life.
Organization history
The Spina Bifida of Greater St. Louis (SBSTL) was founded in 1969 as the Parents Association for Spina Bifida and Hydrocephalus of MO and IL. The name was changed in 1980 to Spina Bifida Association of Greater St. Louis. SBASTL is one of the founding chapters of the National Spina Bifida Association of America (SBAA) that was formed in 1973. In 2008, SBASTL became no longer affiliated with SBAA and our organization was renamed SBSTL
Purpose of our organization
To help individuals with neural tube defects attain their maximum capabilities.
To help promote and provide emotional and educational support for individuals with neural tube defects and their families.
To promote public awareness and concerns for all persons born with spina bifida, hydrocephalus, and other related neural tube defects.
To advocate for, and encourage enactment of, legislation promoting educational and employment opportunities and the removal of architectural barriers.
To promote the development of social skills and to provide opportunities for interaction and networking with other individuals with Spina Bifida.
Facts about SBSTL
SBSTL is a 501(c)(3) nonprofit organization. All board members are volunteers, and many board members are parents and friends of children with Spina Bifida, or adults with Spina Bifida. Current greater St. Louis area membership is over 350 members. All donations to SBSTL are used to support our local organization in the St. Louis area. Our organization helps to educate the public and support individuals and parents/family members living with this birth defect.
Current programs we offer:
Expectant Parent outreach program: This program was designed for expectant parents who have visited the Fetal Care Institute at Cardinal Glennon or another diagnostic center. Each zipper pouch contains a congratulations card, welcome letter from SBSTL, letters from local parents describing their stories and personal contact information, general information about SB and a notebook and pen for writing questions to ask doctors.
New Family outreach program: This program was designed to provide support, counseling, and information to new parents who have just had a child with spina bifida. This program is coordinated with all St. Louis area hospitals that currently provide medical care for individuals born with Spina Bifida.
Birth to age 5 support group: This support group was designed for new parents with infants, toddlers or pre-school age children that have Spina Bifida or neural tube defects. The focus of this group is to become acquainted with other families who are also sharing the new experiences of having a child with Spina Bifida. This may include scheduled play dates, whole group activities or other programs as determined by the parents involved.
Ages 6 to 12 support group: This support group was designed for parents that have children in kindergarten through grade 6. The focus of this group is to network with other families as they deal with the issuers occurring in SB school age children including age appropriate activities, whole group activities, meetings between parents and professional speakers addressing issues of interest and concern such as personal hygiene techniques, psychological and self-esteem issues, school issues, I.E.P information, rights of the physically challenged and much more. The scope of this program will be determined by the parents involved.
Ages 13-16 support group: This support group was designed for parents and their children that are entering adolescence and approaching adulthood The focus of this group is to network with other families as they deal with the issuers occurring in SB adolescent children including age appropriate activities, whole group activities, meetings addressing issues of interest and concern such as personal hygiene techniques, psychological and self-esteem issues, transition I.E.P., rights of the physically challenged and much more. The scope of this age group will be determined by the youth and parents involved.
Youth & Adult (17+) support group: This support group was designed for individuals born with Spina Bifida or other neural tube defects (age 17 and older) by providing social activities and educational opportunities to network. The activities will be determined by the individuals involved.
Awareness and Education: We provide the surrounding St. Louis area with information on Spina Bifida and other neural tube birth defects.
Note: ALL scholarships and grants are reviewed by a committee and when combined together can not exceed $1,000 annually per SB individual.
Educational scholarship: This scholarship was setup to help support the education of any child or young adult born with Spina Bifida. The scholarship can be used to help obtain specific training or pay tuition to aid in their educational, vocational or academic development.
Financial grant: This grant was set up to aid individuals who need financial assistance with medical needs, to create adaptive environments or for other monetary hardships.
Activity grant: This grant was set up to help provide individuals with significant developmental activities and training such as therapeutic horsemanship, wheelchair sports camp and “spina bifida summer camp”.
Information & Communication. We currently produce on-line newsletters, send membership informational email blasts, and maintain a website & various social media venues as vehicles to provide information to all organization members.
Social functions: Our organization plans social events and networking functions for the families. Some events include a spring family weekend retreat at the Edmund A. Babler State Park - Outdoor Education Center, bowling parties, splash pad playdates, major league and professional independent league baseball games, Incredible Pizza Co outings and our annual Christmas party just to name a few.