Skip to main content

Resources

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.

Kentucky Health Department Listing

 

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 - srichardson@sbak.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

Sproutlings sproutlingsdaycare.com

Government Resources:

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

Frazier Rehab Adaptive Sports Program   kentuckyonehealth.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

Health Services:

Abilities Expo   abilities.com/expos/

ActivStyle   activstyle.com

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

Coloplast   coloplast.com

Decent Exposures (Latex Free Undergarments)   decentexposures.com

Emerging Horizons Accessible Travel News   emerginghorizons.com

International Federation of Spina Bifida and Hydrocephalus   ifglobal.sitehosting.be/

Kentucky Department of Special Education Services   education.ky.gov/specialed

March of Dimes   marchofdimes.com/

National Kidney Foundation   kidney.org

UroMed   uromed.com

Accessibility & Mobility Resources

AMRAMP   amramp.com

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