Voices of the CVI community

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

Through My Eyes…..its a whole different world, video by Alfie Fox
Aidan shares what it’s like to live with CVI, a video playlist of Aidan answering questions during his CVI assessment
Yellowstone Blog, by a teenager with CVI, shares their important perspective on common misconceptions about CVI

Get social!

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

Kaleidoscope: The CVI Podcast, interviews with CVI parents and individuals with CVI.
CVI Community Australia, an online community and website led by parents and professionals to create a central space in Australia for sharing learning and ideas about CVI.
Eyeless Mind: A Memoir about Seeing and Being Seen, a family’s story about discovering their son’s CVI and unique neuroplastic verbal-visual processing at the age of fifteen
Little Bear Sees, CVI parent-created website that shares her son’s story and what she’s learned 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.