FACEBOOK GROUPS: These private Facebook groups are a place to connect with others who live with Spina Bifida. There are many other spina bifida related Facebook groups, just type ‘spina bifida’ in the search box and click on ‘groups.’ Here are some:
- Spina Bifida Room
- Adults with Spina Bifida (ages 18 to 80)
- Health and Wellness for Women with Spina Bifida
- Spina Bifida Parents Facebook Group
YOUTUBE CHANNELS: There are several YouTube channels of people telling their stories about living with spina bifida:
- https://www.youtube.com/channel/UCjqzbn1YT87FMHFUtKBkjiA (in English and Spanish)
- https://www.youtube.com/channel/UCT5-UZESYe1y8GE2jEiWjrg (in English)
- I Live with a Disability:
- A social networking website that offers a community for people with disabilities. A place for people with disabilities and their families to discuss sensitive issues with others who can relate and can offer support and resources.
- Bowel Management for Spina Bifida:
- A website run by parents and adults with Spina Bilida who are not medical professionals, but share their successes and lessons learned. There is info on the site for kids, teens and adults. They also have a Facebook group for people living with spina bifida.
- Christopher & Dana Reeve Foundation Resource Finder:
- The website has information for anyone living with paralysis, a program that will link you with a mentor you can talk to for support, a blog that has stories, information on daily life with paralysis, an opportunity to post your story, and updates on research.
- California Independent Living Centers (CILC): 916-325-1690
- Network of community-based centers run and controlled by people with disabilities for any adult with a disability. They offer information and referral, peer counseling, care management, independent living skills training, advocacy, benefits counseling, employment readiness training, housing referrals, assistive technology services, legal aid.
- PACER Center Mobile Apps to Support Transition-Age Youth with Disabilities
- This website has lists of apps specifically for young adults with disabilities get info about college, financial aid, careers, academic support (reading, writing, spelling, organizing), creating a resume, job searching, interviewing, volunteering, daily living skills, cooking, transportation, money management, social skills, sleep, health and wellness, taking medication.
- MDJunction Extension
- An online supportive community and online support groups for people with many disabilities including Permanently Disabled Support.
- The Spina Bifida Resource Network:
- Family support and advocacy, education and recreation, financial assistance, resources.
Return to the Resource Guide for Pediatric Patients and Their Families Index