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 is no longer affiliated with SBAA and our organization was renamed SBSTL

Purpose of our organization

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

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 hospitals that currently provide medical care for individuals born with Spina Bifida.

New parents support group: This support group was designed for new parents with infants or toddlers 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.

K-10 parent support group: This support group was designed for parents that have children in kindergarten through grade 10. The meetings will consist of parent and professional speakers addressing issues of interest and concern to parents, in areas of the child's specific age group. Some of the topics will be personal hygiene techniques, psychological and self-esteem issues, school issues, I.E.P information, rights of the physically challenged and much more.

Youth & Adult Alliance: This group supports individuals living with Spina Bifida by providing social and educational opportunities to network.

Awareness and Education: We provide the surrounding St. Louis area with information on Spina Bifida and other neural tube birth defects. We also provide health and education seminars and conferences.

Educational scholarship: This scholarship was setup to help support the education of any child or young adult born with Spina Bifida. This financial scholarship is used to help obtain some specific training or pay tuition to aid in their educational, vocational or academic development.

Non-scholastic scholarship: This scholarship was set up to aid individuals who desire to attend activities that provide significant developmental activities and training such as therapeutic horsemanship, wheelchair sports camp and “spina bifida summer camp”.

Information & Communication. We currently produce a quarterly Newsletter, and maintain a website as vehicles to provide information to all organization members.  We also maintain a 1-800 phone number. This allows members outside the local area to communicate with us for information or referrals without incurring the cost of long distance phone calls.

Social functions: Our organization plans social events and networking functions for the families. Some events are spring and fall family weekend camp outs at the Edmund A. Babler State Park Outdoor Education Center, bowling parties, attending baseball games and our annual Christmas party just to name a few.

Local Medical Conferences:  Occassionally we will hold a medical conference based upon the needs of the group.  The conferences will bring in professionals to address the current issues in neurology, orthopedics and urology as they relate to the various forms of spina bifida. 

Board of Directors

Members at large:
Kelly Abbott
Debbie Angleton
Brian Kingery
Kimmy Marshall
Erica/Rob Niemira
Bruce Sterling
Lisa Sterling
Ben Sutphin
Lori Ann Fowler
 
Coordinators
0-5 Group: Lori Ann Fowler
6-12 Group: Kimmy Marshall
13-16 Group: Open
YAA: Kelly Abbott
Social Media: Kimmy Marshall & Lori Ann Fowler