Boy with CVI sliding down a metal slide

Voices of the CVI community

Blogs, websites, a podcast, and a book from CVI parents and individuals with CVI

The CVI community has a lot to say.

We are grateful for CVI parents and individuals with CVI who take the time to share their personal stories with the world. The collective voice of CVI families continues to grow. Our stories create awareness. And awareness creates change. 

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

Kaleidoscope: The CVI Podcast, interviews with CVI parents and individuals with CVI.

Little Bear Sees, CVI parent-created website that shares her son’s story and what she’s learned about 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

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

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.