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.

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)

Erin Gillespie - egillespie@sbak.org (859)268-5798

SBAK Western Kentucky Outreach & Services (Louisville to Paducah)

Cindy Pryor - cpryor@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