West Virgina Links
National Resources can be found at the bottom of the page. The Spina Bifida Coalition, Inc. has compiled a list of websites that you may find helpful in learning about spina bifida and its related issues. This page offers links that enable you to leave this site and go directly to the linked site. The links are provided to assist families in locating supports, services, and information related to living with spina bifida.The SB-Coalition is not responsible for the content on or any links contained on these linked sites. Inclusion on this list of links below does not imply personal experience with or endorsement of the organization or company by the SB-Coalition, its Board of Directors or staff.
Advocacy
- ASTRIVE Advocacy
- Disability Rights of West Virginia
- Fair Shake Network
- LiveAbility
- Mountain State Centers for Independent Living
- On Purpose WV
- The Arc of WV
- WV Developmental Disabilities Council
- WV Parent Training
- WV Statewide Independent Living Council
Education
- Easterseals West Virginia – early intervention, PT, OT, speech
- Special Education – West Virginia
- WV Birth to Three – Early Intervention
- WVU Center for Excellence in Disabilities
Employment
Financial Assistance
Medical
- Children’s Special Health Care Needs
- Marshall Health – Spina Bifida clinic and resources
- Marshall University Project DOCC – Parent resources and support
- WVATS Virtual Loan Library – borrow and try equipment
- WVU Medicine – Spina Bifida clinic and resources
Recreation
National Resources
Advocacy
- Advocacy – Spina Bifida Association
- Americans with Disabilities Act
- Disability Employment Policy
- Federal Transit Administration
- Office for Civil Rights | U.S. Department of Education
- Patients Rising – Insurance and Medical Care Advocacy
Education
- Non-Verbal Learning Disability Project
- Office of Special Education
- We Connect Now – Helping college students with disabilities to succeed
- Wrightslaw Special Education Law and Advocacy
Employment
Financial Assistance
- AMBUCS – Inspiring Mobility & Independence
- Oracle Health Foundation
- Social Security Disability Resource Center
- United Healthcare Children’s Foundation
Medical
- Chiari malformation
- Hydrocephalus Association
- MOMStrial – YouTube – describes the Management of Myelomenigocele Study (prenatal vs. postnatal repair)
- Health Passport Form – editable PDF
Nutrition
Online Discussion Groups
- Spina Bifida Moms – blog by a mom with spina bifida
Spina Bifida
- Right Under My Nose. A story for Children with Spina Bifida.
- SBtween2teen Facebook Group
- Spina Bifida – information from the NIH
- Spina Bifida Association – Research, Advocacy, Education, and Support