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Takeaways from the CVI: Collaboration Conference

The 2022 Perkins CVI Conference brought together more than 170 medical professionals, educators, and families living with CVI from across the nation and around the world “to discuss the current state of CVI and to advocate for bold next steps.” Some major “takeaways” from the conference, according to the Perkins School for the Blind, include:

“CVI is a priority for the National Eye Institute:” NEI’s Director, Dr. Michael Chiang, shared that CVI research is now a priority, resulting from the CVI community’s advocacy. He covered next steps, including evidence-based guidelines for diagnosis, treatment, rehabilitation, and more. Listen to Dr. Chiang’s keynote here.

“There’s transformative new CVI research underway:” Many experts are working to find out more about CVI and the brain. A research panel, including Lotfi Merabet, OD, PhD, Barbara Landau, PhD, Glen Prusky, PhD, and Gena Heidary, MD, PhD, provided updates on such topics as genetic deletion’s effects on spatial organization and learning language and measuring visual function by assessing one’s gaze.

“We need to listen to people with CVI:” Including people with CVI is essential to moving ahead. A number of individuals shared their stories, calling themselves “’CVI-ers.’” These self-advocates spoke about their unique journeys, reinforcing the unified message that “CVI deserves more attention, and kids with CVI deserve the same opportunities as other children.” Hear voices of CVI here in this video.

“The Perkins CVI Protocol is a game-changer for educators:” The Perkins CVI Center released their protocol: “A digital assessment and educational roadmap for the whole child,” aimed at giving families, TVIs, and providers the tools needed to help children. Based on the most current science, it’s vetted by medical experts and is individualized, inclusive, and set up to evolve with science advances. Learn more here about the Perkins CVI Protocol.

“All kids with CVI can learn:” Vision is not “a prerequisite to learning.” However, the “incidental learning” that occurs for “neurotypical” children is not there for those with CVI. Educators and providers explored a wide range of topics related to accessible education and services, such as the Expanded Core Curriculum, serving the 0 to age three population and families, and “collaborative assessment guidelines.”

“Help and hope are on the way.” It is the beginning of a new era in CVI, thanks to the support of NEI, ongoing research initiatives, the Protocol that adds to the tools available to make “learning easier and more tailored to kids with CVI,” and innovative thinking by educators about reaching all children.

Read more on the Perkins website about 6 big takeaways from the CVI: Collaboration for Change conference.