First-ever CVI awareness day to be held in Boston in September

Participants at CVI Conference 2024 in Boston. Pictured are Matt Tietjan (TVI), Tina Zhu Xi Caruso (adult with CVI), Rachel G Bennett (Director of CVI Now and CVI parent), and Dagbjört Andrésdóttir (adult with CVI).

Image courtesy of the CVI Center at Perkins School for the Blind.

Perkins School for the Blind, Watertown, Massachusetts, is hosting a CVI Awareness Day at the Massachusetts State House in Boston. The event is scheduled for September 9, 2025, from 12:30 to 3:00 PM.

This event provides an opportunity to connect with experts and innovators who are focused on driving progress, research, education, and meaningful change for people with cerebral/cortical visual impairment (CVI).

CVI, a leading cause of pediatric visual impairment in the US and other industrialized nations, is based in the brain and is a diagnostic entity distinct from cortical blindness, according to Lotfi Merabet, OD, PhD, a leader in CVI research who will be a participant in a panel discussion at the event.

The Awareness Day is hosted by State Representative Steve Owens of Watertown and the CVI Center at the Perkins School for the Blind.

This event can be attended virtually or in person.

Attendees will have the opportunity to:

Some of the art featured at the art exhibit at the CVI awareness day.

Image courtesy of the CVI Center at Perkins School for the Blind.

• Discover why CVI often goes undiagnosed and is widely misunderstood.
• Learn how you can make a direct impact to improve outcomes, raise awareness, and celebrate those living with CVI in the Commonwealth of Massachusetts.
• Attend a panel discussion with legislators and their staff, featuring insightful discussions and change-making stories.
• Visit with representatives at the State House to continue raising CVI awareness.
• Explore the CVI Art Exhibit.

The CVI Art Exhibit that will be on display for 1 week at the State House will demonstrate the unique perspective of patients with CVI.

More information and a registration form are available at the Perkins School for the Blind website.

More about CVI

The CVI Center at the Perkins School for the Blind provided a few facts about CVI to raise awareness:

• Cerebral/cortical visual impairment (CVI) is the leading cause of childhood blindness and low vision.
• One in 30 kids in mainstream classrooms may have CVI-related visual difficulties.
• Less than 20% of kids with CVI in the US have a diagnosis. CVI is alarmingly missed and underdiagnosed.
• Children with undiagnosed CVI become adults with undiagnosed CVI, who might have unexplained vision issues. This has been going on for decades, affecting generations of people.
• More than ever before, the time is now to confront CVI, because we know we can help children with CVI access their world if we get them the right diagnosis and intervention.
• When a student puts their head down in class, doesn’t make eye contact when speaking, or doesn’t complete a worksheet, there’s a reason. Sometimes it’s CVI.
• This misunderstood, brain-based visual impairment impacts everything from a person’s education to their social life. But when parents, medical providers, and educators get it, we can change lives for people with CVI.
• Growth isn’t a straight line, but every step forward matters. There are so many ways our students learn, grow, and succeed—on their own timeline, in their own way.
• CVI manifests differently in each child who has it; they may require different accommodations. Each individual’s experience with CVI is different, and our journeys as parents reflect that. But what remains the same is this: our children will access and engage with the world in their own ways. And in the process, they’ll reshape everything we thought we knew about vision, learning, and love.