We have several family oriented events & age appropriate events (0-5, 6-12, 13-16 & 17 and up) throughout the year. About Us:
Our Mission Statement: 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 Hist
ory:
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. 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:
To help persons 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. 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. Parents (Moms/Dads) support groups:
These two support groups designed for parents with children & adults 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 experiences of having a child with Spina Bifida. Birth – Age 5 Group:
The Birth to Age 5 group has been going since 2008. If you would like to get together, become friends, provide support and have fun, please call Linda Niemeier at (636) 980-7243, email [email protected]. We would love to hear from you and plan a get together soon! Ages 6 to 12 Group:
The 6 to 12 group gets together on a regular basis. If your child with spina bifida who is between 6 and 12 years old, we are looking for you! If you would like to get together, become friends, provide support and have fun, please email Melanie Willis at [email protected]. Ages 13 to 16 Group:
The 13 to 16 age group is a newly formed group. If your older child with spina bifida is between 13 and 16 years old, we are looking for you! If you & your child would like to get together, become friends, provide support and have fun, please call Bethany Herrera at (314) 288-5731 or email [email protected]. Young Adults & Adults:
We would love to have you join us in our activities! Send your email address to Kelly (using the email address below) so you will receive notification of future events. Check the Events and Calendar page frequently for scheduled events. Have suggestions for an event we can do in the future? Don’t hesitate to send me an email. Please contact Kelly Abbott at (618) 980-3377 or email [email protected]. 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. Activity Program:
The Activity Program was established to enhance opportunities for persons born with Spina Bifida to achieve their full potential through life-skill or therapeutic activities. Activity Program funding from SBSTL make it possible for the student to choose life-skill activity pursuits that may otherwise be outside of financial reach. Examples of acceptable programs include (but are not limited to) fees to attend a specialized camp, special swimming lessons, therapeutic horsemanship or other life-skill programs. Please note that Activity Grants may be competitive and funds are limited, making it impossible to approve every request. Financial Assistance:
The intent of this grant is to provide financial assistance for a wide variety of items. Examples of acceptable requests include (but are not limited to) construction of a ramp, specialized equipment (such as braces/walkers), therapy, medical expenses, travel for special medical treatment or other unique requirements. Please note that Financial Grants may be competitive and funds are limited, making it impossible to approve every request. Scholarship Program:
The Scholarship Program was established to enhance opportunities for persons born with Spina Bifida to achieve their full potential through higher education. SBSTL Scholarships can make it possible for the student to choose educational pursuits that may otherwise be outside of financial reach. Scholarship grants are for post-secondary education, at 2-year or 4-year colleges or certified vocational schools. Please note that Scholarship Grants are competitive and funds are limited, making it impossible to grant every request. Information & Communication:
We currently maintain an email distribution list, a website and other social media outlets as vehicles to provide information to all organization members. Social functions:
Our organization plans social events and networking functions for the families. Some events a spring family weekend retreat 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.
2022 Board of Directors
Chair: Bob Baer
Vice Chair: Gary Vaughn
Treasurer: Pam Abbott
Secretary: Norma Asher
Business Manager: Mark Abbott
Members at large:
Kelly Abbott
Debbie Angleton
Bethany Herrera
Jane Jackson
Brian Kingery
Ben Sutphin
Melanie Willis
