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Resources

SPINA BIFIDA INFORMATION

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

Norton Children’s Hospital (Louisville, KY)
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, KY)
Shriners Hospitals for Children® has been a leader in pediatric orthopedic care since 1922.

Monroe Carell Jr. Children’s Hospital at Vanderbilt (Nashville, TN)
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 (Indianapolis, IN)
The Spina Bifida Clinic provides comprehensive multidisciplinary care to children and adolescents with spina bifida.

Cincinnati Children's Hospital (Cincinnati, OH)
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 Counties Health Department Listing

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FAMILY & CHILDREN SUPPORT SERVICES (KY)

SBAK Outreach & Services    Sarah Richardson - srichardson@sbak.org  (502) 637-7363

Ky Dept of Education, Special Education Services

Kentucky Office for Children with Special Healthcare Needs

Build Inclusion (Education, Employment, and Independent Living)

Cardinal Hill Child Development Center and Adult Day Health

Commonwealth Council on Developmental Disabilities

Easter Seals (Western Kentucky)

Ky Special Parent Involvement Network (KY-Spin) 

Kids Center for Pediatric Therapies

The Kidz Club Pediatric Extended Care

Sproutlings Pediatric Daycare and Pre-School

 

 

GOVERNMENT RESOURCES

American Disabilities Act

Commonwealth of Kentucky Cabinet for Families & Children

Social Security Disability Benefits

 

 

HEALTH SERVICES

Wheelchairs, Seating & Mobility

      Sunrise Medical

      National Seating & Mobility

      numotion

Orthotics & Prosthetics Services 

     Transcend Orthotics & Prosthetics

     Hanger Clinic

Medical Supplies

     Coloplast

     numotion

     ActivStyle

Latex Allergy Overview

Latex Free Undergarments

 

ACCESSIBILITY & TRANSPORTATION

AmRamp Accessability

Center for Accessible Living

Superior Van & Mobility

Mobility Works Wheelchair Vans

TARC

Best Electric Wheelchairs Guide

Guide to Vehicle Modifications for Persons with Disabilities

Home Accessibility Checklist

Accessible Travel News

 

ADAPTIVE SPORTS & ACTIVITIES

Adaptive Sports Center

Camp for Courageous Kids

Central Kentucky Riding for Hope

Frazier Rehab Adaptive Sports

Greenhill Therapy

Louisville Wheelchair Fencing

Miracle League Louisville

National Ability Center

 

 

ADVOCACY AND OTHER INFORMATION

American Association of People with Disabilities

Abilities.com

International Federation for Spina Bifida and Hydrocephalus

March of Dimes

National Kidney Foundation