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. NCH also offers a Spina Bifida Multidisciplinary Clinic.
Shriners Hospital for Children-Lexington
Shriners Hospitals for Children® has been a leader in pediatric orthopedic 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 Children'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.
Office for Children with Special Health Care Needs (OCSHCN)
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 Outreach & Services Sarah Richardson - firstname.lastname@example.org (502)637-7363
Build Inclusion- buildinclusion.org
Cardinal Hill- cardinalhill.org
Commonwealth Council on Developmental Disabilities- kyccdd.com
Easter Seals (Western Kentucky)- easterseals.com
First Steps- fs.chfs.ky.gov
Kentucky Special Parent Involvement Network (KY-SPIN)- kyspin.com
Kids Center- kidscenterky.com
The Kidz Club- thekidzclub.com
American Disabilities Act (ADA)- ada.gov
Commonwealth of Kentucky, Cabinet for Families & Children- chfs.ky.gov
Disability-Connecting the Disability Community to Information & Opportunities- disability.gov
Social Security Disability Benfits- ssa.gov/disabilityssi
Adaptive Sports and Activites:
Adaptive Sports Center adaptivesports.org
Camp for Courageous Kids courageouskids.org
Central Kentucky Riding for Hope ckrh.org
UofL Health - Frazier Rehab Adaptive Sports Program uoflhealthnetwork.org
Green Hill Therapy greenhill.kydataseam.com
Louisville Wheelchair Fencing louisvillefencing.org
Metro Louisville Adaptive and Inclusive Recreation louisvilleky.gov
Miracle League Louisville miracleleaguelouisville.org
National Ability Center discovernac.org
Abilities Expo abilities.com/expos/
Advanced Medical Group amgrx.com
American Academy of Allergy, Asthma & Immunology - Latex Allergy Overview aaaai.org
American Latex Allergy Association/ALERT latexallergyresources.org
American Association of People with Disabilities aapd.com
Center for Orthopedic & Prosthetic Care centeropcare.com
Conquer Chiari conquerchiari.org
Decent Exposures (Latex Free Undergarments) decentexposures.com
Emerging Horizons Accessible Travel News emerginghorizons.com
International Federation of Spina Bifida and Hydrocephalus ifglobal.sitehosting.be/
March of Dimes marchofdimes.com/
National Kidney Foundation kidney.org
Accessibility & Mobility Resources
Center for Accessible Living calky.org
Superior Van and Mobility superiorvan.com
Transit Authority of River City ridetarc.org
Consumer Affairs Wheelchair Guide https://www.consumeraffairs.com/health/electric-wheelchairs/#guide-features