Spina Bifida Information Resources

Spina Bifida Association
The Spina Bifida Association (SBA) serves adults and children who live with the challenges of Spina Bifida.  Since 1973, SBA has been the only national voluntary health agency solely dedicated to enhancing the lives of those with Spina Bifida and those whose lives are touched by this challenging birth defect.  Its tools are education, advocacy, research, and service.

The Centers for Disease Control & Prevention and Control (CDC) - This site has a fact based overview of Spina Bifida, Living with Spina Bifida at Any Age, and Personal Stories from people affected by Spina Bifida.

Babycenter Spina Bifida Kids Message Board
Want to learn more about parenting a child with Spina Bifida? Join the more than 400 parents who share their stories, ask questions, impart tips, and support each other on this vibrant message board. These moms and dads answer questions honestly and compassionately based on their experiences and gathered knowledge.

Spina Bifida Clinics, Hospitals, and Health Departments:

Norton Children’s Hospital
Services and programs cover nearly every aspect of care and treatment for children – all in a child friendly, family centered atmosphere.

Shriners Hospital for Children-Lexington
Shriners Hospitals for Children® has been a leader in pediatric orthopaedic care since 1922.

Monroe Carell Jr. Children’s Hospital at Vanderbilt
The Spina Bifida Program at the Monroe Carell Jr. Children’s Hospital at Vanderbilt addresses the unique needs of individuals diagnosed with Spina Bifida.

Riley Hospital for Children in Indianapolis
The Spina Bifida Clinic provides comprehensive multidisciplinary care to children and adolescents with spina bifida.

Cincinnati Chidren’s Hospital
The Center for Spina Bifida Care at Cincinnati Children’s Hospital Medical Center provides comprehensive, family-centered medical care to infants, children and adolescents with repaired myelomeningoceles and other neural tube defects.

Kentucky Health Department Listings (updated January 2014)

Commission for Children with Special Health Care Needs
Our mission is to enhance the quality of life for Kentucky’s children with special health care needs through direct service, leadership, education and collaboration.

Family & Children Support Services (Kentucky)

SBAK Eastern Kentucky Outreach & Services (Lexington to Pikeville)

Mary Beth Long - (859)268-5798

SBAK Western Kentucky Outreach & Services (Louisville to Paducah)

Sarah Richardson -  (502)637-7363

Build Inclusion

Cardinal Hill

Commonwealth Council on Developmental Disabilities

Easter Seals (Western Kentucky)

First Steps

Kentucky Special Parent Involvement Network (KY-SPIN) 

Kids Center

The Kidz Club


Government Resources:

American Disabilities Act (ADA)

Commonwealth of Kentucky, Cabinet for Families & Children

Disability-Connecting the Disability Community to Information & Opportunities

Social Security Disability Benfits

Adaptive Sports and Activites:

Adaptive Sports Center

Camp for Courageous Kids

Central Kentucky Riding for Hope

Frazier Rehab Adaptive Sports Program

Green Hill Therapy

Louisville Wheelchair Fencing

Metro Louisville Adaptive and Inclusive Recreation

Miracle League Louisville

National Ability Center:

Health Services:

Abilities Expo


Advanced Medical Group

American Academy of Allergy, Asthma & Immunology - Latex Allergy Overview

American Latex Allergy Association/ALERT

American Association of People with Disabilities

Center for Orthopedic & Prosthetic Care

Conquer Chiari


Decent Exposures (Latex Free Undergarments)

Emerging Horizons Accessible Travel News

International Federation of Spina Bifida and Hydrocephalus

Kentucky Department of Special Education Services

March of Dimes

National Kidney Foundation


Accessibility & Mobility Resources


Center for Accessible Living

Superior Van and Mobility

Transit Authority of River City