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Understanding CVI: What it is & and why it’s an enormous crisis

CVI is the leading cause of blindness in children. Hundreds of thousands who have it aren’t getting the help they need.

The leading cause of blindness in children isn’t in the eyes, but in the brain. And Cortical / Cerebral Visual Impairment (CVI) affects 150,000+ kids in the U.S., a number that continues to grow. 

But CVI is misunderstood — and there aren’t enough teachers or medical professionals who have the training to help, or to diagnose it. This means kids with CVI can’t get the education, medical attention and early intervention they need. 

This has created a crisis. A whole generation of children are at high risk of growing up without the support they need. At Perkins, we know we can help kids with CVI see more, if we can reach them early. 

The time for action is now. As we’ve always done in the face of crisis, we’re taking a leadership role in addressing this problem head on. But truly, we cannot end this crisis alone. That’s why we’re inviting medical professionals, educators, policy makers, families and supporters to join us on a mission to reach 50,000 children in the next five years.

Here, you’ll discover what you need to know about the leading cause of blindness, how we’re responding and the ways your support can create a better future for all children. 

What is CVI?

CVI is a brain-based visual impairment caused by damage to the visual pathways or visual processing areas of the brain. 

Often, people associate blindness with ocular — or eye — impairment. This makes CVI very hard for some to understand because it’s a neurological issue, where their brains have trouble processing what their eyes are seeing. 

Kids with CVI also experience different severity levels and manifestations of vision loss. 

With CVI, every individual person’s lived experience is different. 

Why is CVI such an emergency?

CVI is not new — but it is widely misunderstood by both the education and medical community, and therefore, it’s largely undiagnosed or misdiagnosed. 

The best way to understand the crisis surrounding CVI is to understand a certain not-at-all uncommon family journey. 

Now take this journey of an individual family and multiply it by 150,000 in the U.S. alone. 

That is the reality of the CVI crisis today. The reason, ultimately, is that our collective understanding of CVI is not where it needs to be. To gain the knowledge we need, we must convene families, educators, medical providers and researchers alike to pool our insights and build on them. 

At Perkins, we’re urgently confronting CVI

We are not standing by. We are urgently confronting the world’s leading cause of childhood blindness through in-depth education, meaningful collaboration, transformative innovation, driven by the confident expectation for change. 

We are on a five-year mission to reach 50,000 kids with CVI. 

This is why we’ve created CVINow.org, the website and Facebook community for families of children with CVI. This is why we’ve developed a certificate program at the University of Massachusetts in Boston, for teachers of the visually impaired to assess and provide services to children with CVI. This is why we’ve created and continue to develop a new CVI curriculum from Perkins eLearning. 

And there’s more. Our 5-year strategic plan centers on 5 key elements: assessment, learning, teacher training, family advocacy, medical and higher education partnerships.

Family advocacy: 

Assessment and learning:

CVI teacher training: 

Medical and higher education research and partnerships: 

How you can help kids and families with CVI

You can play a vital role in changing the future for millions of children with CVI. The best way to ensure more children receive the support they need is to get involved with our work

Another way is to just continue familiarizing yourself with CVI, so you can become a spoken advocate for kids and help us raise awareness. Here are a few more resources to get you started:

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