September is CVI Awareness Month! Hope for HIE was proud to exhibit at Perkins School for the Blind's 2026 CVI Conference, "The Collective Power of Us," held July 19–21 in Boston. Our table gave us the chance to connect directly with families, educators, and medical professionals in the CVI community from all over the world.
Allison, our Program Coordinator, attended all three days, including the medical pre-conference where eight different medical professionals presented their current research on CVI. Dr. Lotfi Merabet was the keynote speaker, giving insight into current CVI research from around the world and where it's heading, highlighting the use of AI and virtual reality.
One highlight especially exciting for our community: Dr. Mohamed El-Dib and his team at Brigham and Women's Hospital, in partnership with the CVI Now team at Perkins School for the Blind, are advancing research on early detection of CVI. A new paper highlighting their CVI awareness survey and guidelines is set to publish soon in Pediatric Research, and their related VISION study protocol is publicly listed on ClinicalTrials.gov (NCT07275021) for anyone who wants to follow along.
This trail website states: "This study addresses a critical gap in pediatric care by prospectively evaluating high-risk neonates using clinical, neuroimaging, neurophysiologic, and standardized developmental assessments through 24 months of age. Early identification of CVI may support timely referral for visual rehabilitation and developmental services, potentially improving long-term functional outcomes. Developing a predictive model for early CVI detection will contribute to improved clinical pathways, enhance early diagnosis, and reduce the long-term educational and social burden associated with undetected CVI. Ultimately, this research aims to improve outcomes and quality of life for infants at risk for brain-based visual impairment."
We also heard from teens sharing their lived perspectives with CVI. The message throughout the conference was that when you've met a person with CVI, you've met one person with CVI — it affects everyone differently, and therapy plans and approaches should reflect that.
Thank you to everyone who stopped by our table. We always leave these conferences inspired by this community's dedication to CVI awareness and support.
If you're in Massachusetts, CVI Awareness Day is at the State House on September 29th, 2026.
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