6 big takeaways from the CVI: Collaboration for Change conference

A woman speaks into a mic during a panel discussion.

Expertise. Bold ideas. Personal journeys.

Our CVI: Collaboration for Change Conference was filled with powerful conversations, connections, and community. More than 170 medical professionals, educators, and families living with CVI traveled from across the United States and around the world — from as far away as Australia! — to discuss the current state of CVI and to advocate for bold next steps.

Together, we pushed for heightened CVI awareness, discussed major scientific initiatives, and strengthened our commitment to reach even more children with CVI.

Here are some big, very exciting takeaways from the conference.

CVI is a priority for the National Eye Institute

Dr. Micheal Chiang, director of the National Eye Institute at NIH, shared significant news: CVI research is now a priority at the NEI, thanks to collective advocacy from the CVI community.

Chiang shared important next steps that will begin to address gaps in CVI knowledge. These include evidence-based tools and guidelines for diagnosis, classification, management, evidence-based rehabilitation approaches, strategies for meeting individual rehabilitation needs, and better understanding of the neural basis of CVI and neuroplasticity-based therapies. Collaboration, awareness, and scientific innovation are central to NEI’s new mission.

“We’re going to rely on the CVI community to help us,” he said.

Listen to his keynote, including important next steps that will begin to address the gaps in CVI knowledge and care. (If you have not yet registered for the conference recordings, go to our conference page.)

There’s transformative new CVI research underway

So many experts are working tirelessly to learn more about CVI and the brain. Our research panel—Lotfi Merabet, OD, Ph.D., MPH, Barbara Landau, Ph.D., Glen Prusky, Ph.D., Gena Heidary, MD, Ph.D.—shared important updates.

We learned about CVI’s clinical presentation and new innovations in eye-tracking as a proxy for visual performance, EEG, and virtual reality innovations from the Laboratory for Visual Neuroplasticity, headed by Merabet. Landau offered a glimpse into her research about the effects of genetic deletion on spatial organization and language learning. And Prusky discussed why visual acuity tests have limitations for analyzing neural visual function. His lab developed procedures to measure the visual function through the assessment of gaze, which allows for individuals with CVI who have complex communication needs and other disabilities to be a part of CVI research. This is crucial work.

“There’s a need to objectively quantify visual function after brain injury in children and to characterize how visual impairment changes over time in order to better define, diagnose, grade, and treat CVI,” he said.

We need to listen to people with CVI

Centering CVI voices is essential in everything we do to move this field forward. People with CVI deserve to have agency and power; they deserve to feel seen, heard, acknowledged, and validated.

Matt Tietjen, TVI and a leader in the field, stressed that “we need to listen to people with CVI.”

After all, CVI is the leading cause of blindness, but so often it’s a complete mystery—at the conference, the phrase “like being on another planet” came up a lot.

Many doctors don’t even know what it is. Too often, many children languish without a diagnosis and without help. Sometimes, kids with CVI are perceived as defiant or obstinate. We must amplify our voices to bring CVI into the mainstream. We must remind people that blindness is a neurological experience, too.

As such, we’re so grateful to the many people with CVI who shared their stories. They call themselves “CVI-ers,” and they’re brave self-advocates.

Deafblind specialist Nai talked about the trauma of being undiagnosed until they were 18 years old, which sparked a life-changing shift in their self-esteem.

“I had been trying to be a sighted person. When I shifted from being a ‘failed sighted person to a successful blind person, that’s when my whole life just completely changed,” they said.

Marquardt shared how her daughter loves literature and embraces audio books; she’s now leading a neighborhood literacy club. On the other hand, Barbara Lopez, Ph.D., shared her seemingly endless journey to a CVI diagnosis for her son.

Their journeys are unique, but their message is the same: CVI deserves more attention, and kids with CVI deserve the same opportunities as other children. CVI is real, and people with CVI have a right to life-changing access. And access must run deep. Every person with CVI has a right to intentional, systematic, and meaningful educational programs and community services.

“For me, success is about leading an enriched life, having meaningful relationships, having a sense of fulfillment, feeling independent,” Nai said.

Hear more voices of CVI in this video.

The Perkins CVI Protocol is a game-changer for educators

The CVI Center unveiled the Perkins CVI Protocol: A digital assessment and educational roadmap for the whole child. The Perkins CVI Protocol is built to give families, TVIs, and practitioners the tools they need to help children with the leading cause of childhood blindness. It’s based in the most current science, vetted by 15-plus leading medical experts. It’s individualized, inclusive, and built to evolve with new science.

Because CVI is based in the brain, teachers who are trained in CVI can help teach children with CVI how to see more, and access their world.

We need more highly trained teachers in CVI. We need every medical professional to know and understand CVI, so they can diagnose it. And we need more funding, more research, more global collaboration across the visual impairment and neurological communities. Only together can we help children with the leading cause of blindness.

Learn more about the Perkins CVI Protocol.

All kids with CVI can learn

Vision is not, and should not be, a prerequisite for learning.

“Our kids deserve every opportunity to be who they are. There’s so much our kids are missing out on incidentally that we need to bring to them,” said TVI Lacey Smith.

We agree! But the incidental learning that happens for neurotypical kids just isn’t present for children with CVI.

As such, educators and providers discussed a wide range of topics related to accessible education and services, including the Expanded Core Curriculum, Augmented and Alternative Communication (AAC), blending systematic instruction and CVI promising practices, serving the 0-3 population and their families, CVI and Auditory Processing Disorder, and collaborative assessment guidelines.

Kids need comprehensive assessments conducted by educators deeply familiar with CVI. Learning needs to happen on each child’s terms. We were joined by passionate, skilled educators devoted to understanding the nuances of each child’s learning profile, from infancy to adulthood.

“Regardless of where they are, kids should have access to literacy right from infancy. All kids can learn, and all kids can learn to read, even if it’s in an unconventional way,” emphasized TVI Tammy Reisman.

Help and hope are on the way

“This is the end of the beginning,” said Perkins superintendent of education Ed Bosso at the conference’s conclusion.

We’re entering an exciting new era in CVI. Why?

We know the NEI supports our mission.
There are several ongoing research initiatives designed to blaze new trails in CVI diagnosis and treatment.
The Perkins CVI Protocol will add to the suite of CVI assessments and harness the passion and talent of educators worldwide to evaluate students, making learning easier and more tailored to kids with CVI.
Educators are thinking innovatively about how to reach all children, prioritizing access and whole-child models of inclusion.

Most of all, people with CVI and families have a voice. CVI won’t stay a mystery or an afterthought any longer. Together, we can reach all children with CVI. We can, and we did, collaborate for change.

Couldn’t be there in person? That’s OK! Register for and watch our recorded sessions. If you already have the access password, go to the conference recordings’ main page.