The CVI community has a lot to say.
We are grateful for people with CVI and their families who take the time to share their stories with the world. The collective voice of CVI continues to grow. Our stories create awareness. And awareness creates change.
Blogs and videos by adults with CVI
- Nicola McDowell’s Blog, an incredible individual with acquired CVI, shares her experiences.
- The CVI Perspective, a rich, vulnerable, and truth-telling blog by an adult with CVI
- My Vision—Living with CVI, a powerful and informative blog by Dagbjört Andrésdóttir
- Check out CVI Now’s Q&As with Nai, Tina, and Dagbjört.
- Life’s Not Over, It Just Looks Different, Christopher Gordon started his channel as a way to share his experience living with CVI and talks about how the world looks through his eyes after acquiring CVI as an adult.
Voices of teenagers with CVI
We love these social media accounts from disability advocates, artists, educators, CVI parents, therapists, and many more. You’ll find so much camaraderie and inspiration at:
Parent blogs about their own CVI journey
- CVI Journey includes Q&As with medical professionals, parents, and educators; a list of top pediatric rehabilitation centers worldwide; posts about her own CVI journey; and free digital interactive stories.
- CVI Momifesto features a collection of parent stories, along with her own journey as a CVI parent advocate
- Everyday CVI offers ideas and photos of how this parent embeds CVI strategies into everyday family living.
- Start Seeing CVI is a website that includes a list of resources on the brain and CVI as well as a long-standing blog sharing important insights on raising a child with CVI
- See CVI, Speak AAC, a CVI parent highlights her own journey raising a child with CVI and complex communication needs.
Parent-created resources about CVI
What’s your CVI story? We’d like to hear it. Join our private CVI Now Facebook Group for parents and families, and share. You can also use the contact us link to share your ideas.