Stories and resources

CVI stories

The CVI community has a lot to say. The collective voice of individuals with CVI and CVI families continues to grow. Our stories are powerful. Our stories create awareness. Our stories change how the world sees CVI.


Centering CVI Voices

Showing 44 Results for Family stories

Omer wears a yellow shirt and sits at a restaurant table.

A day in the life with CVI: Omer

Toddler Luka sits in the middle of a visually busy rug.

How Luka’s CVI diagnosis provided understanding, community, and healing

Logan and his three siblings pose for a professional photo.

Stories and advice from siblings of kids with CVI

Bower wears a life jacket and sits

Bower’s dual-diagnosis journey of cerebral palsy and CVI

Jack kneels to pose with his guide dog, a yellow lab named Laredo.

My experience transitioning to college as a student with CVI

Shea hold his son Koen showing him a large red adaptive communication switch.

Celebrating CVI dads: Shea and Koen

Stephanie kneels and smiles next to a smiling Rosalie in front of a bright blue slide at a playground.

What does intentional advocacy look like? CVI mom Stephanie Kung shows us

Dagbjört, a white woman with blonde hair and a green rain jacket, sits on the mossy ground.

My experience with CVI and migraines


How Bruce creates joy while living with CVI and Angelman syndrome

A young Nolan wears glasses and smiles.

“Have you ever heard of CVI?” A parent story of persistence and support

Brittany and Joseph Hewitt’s with their daughter, Harper, smiling in front of a Christmas tree

CVI advocacy win: How Brittany Hewitt fought for school accessibility in Indiana

Zeke and Tina take a selfie

7 images that show what people with CVI may see