NEW HAVEN, Conn. (WTNH) — Cytomegalovirus, is the top cause of non-genetic deafness, but still little known is about it.

The virus, which is the most dangerous to pregnant women who are around toddlers, can lead to epilepsy, cystic fibrosis, seizures and death in newborns.

It’s a cause that’s become a passion for News 8 anchor Ann Nyberg, whose granddaughter, Bevin, was born deaf and diagnosed with congenital CMV.

Nyberg was joined Monday by Rob Tetrault, the president and founder of the Canadian CMV Foundation. Within weeks of his son being born with CMV, he knew his family had to take action.

“It was unacceptable, the status quo,” Tetrault said. “Nobody was talking about it, nobody was doing anything for awareness. There was no kind of vaccine research, nothing was happening, and that upset me and my wife. So, we decided to do something.”

His work has led to universal screening in some areas of Canada, and he has a petition to expand it even further.

Tetrault also plans to run 506 kilometers — 315 miles — over the course of 12 days to raise awareness.

Watch the full interview in the player above.