Article
8 essential takeaways from the Perkins CVI Conference: Building Meaningful Recognition
Discover highlights from the 2024 CVI Conference: enthusiastic attendees, insightful sessions, and impactful takeaways for meaningful recognition of CVI.
Enthusiasm. Commitment. Momentum. Joy. In June 2024, we convened hundreds of families, providers, educators, and CVI thought leaders for our biannual three-day CVI Conference at the Revere Hotel in Boston. This year’s theme,“Building Meaningful Recognition,” was right on target: This was our biggest conference yet.
Our community was validated and heard. And we also left with actionable steps for another year of advocacy, awareness, and empowerment to ensure that CVI receives the recognition it deserves. Here’s what to know about our event.
1. It was completely sold out!
Our community is vibrant, thriving, and engaged. More than 250 people gathered from 12 countries and 37 states.
2. The NIH was a major presence.
CVI is taken seriously by the medical and research fields. Our message is loud and clear: CVI is the leading cause of childhood blindness and low vision. Six NIH program staff attended and presented at the conference, showcasing a deep commitment to ongoing CVI funding and research. We can look forward to improved diagnostic awareness and criteria, resources, and advocacy. In fact, they even elected to attach the CVI registry advisory group meeting to our conference.
In the words of NIH Dr. Kristina Hardy:
“We have a lot of work to do when it comes to CVI. You all have been digging for a while, and we’re here to bring more shovels.”
We are being heard—and seen.
3. Our community is powerful.
The conference highlighted voices from people with CVI. At Perkins, we confront CVI from the inside out, amplifying lived experiences and voices, understanding that each person’s CVI experience is deeply unique and individual. We know the importance of research and education. But most of all, we know that true change comes from listening to and believing people with CVI. We heard personal experiences, honest opinions, and emotional reflections from CVI’ers from around the world, speaking illuminating truths and sharing candid stories. We hear you. We see you. We believe you. And together, we’re going to change the world. In the words of one CVI parent: “I feel like every time I come to this conference, I leave with exactly what I need.”
4. Our work is changemaking.
At Perkins, we translate research into practice. The depth and nuance of our CVI expertise were on display with sessions that captured early intervention strategies, assessment and educational tools, galvanizing research, and advocacy centering around autonomy, agency, and choice.
5. Our goals are clear.
We will continue to build CVI awareness. We will center the lived experiences of people with CVI and their families. We will work to improve early CVI identification and diagnosis, availability and access to educational and state support services and providers, and advocate for inclusive policies that reflect CVI’s prevalence.
6. The time for action is now.
We’re deeply energized by our mission because we also know how much work is left to be done: There are more than 180,000 children in the United States with CVI. Most of them are not diagnosed. Familiarity with CVI remains limited. Accessibility and availability of support resources continues to be an obstacle for many families. There’s lots more work to do, and we’re here to create opportunities for providers to build deep CVI knowledge.
7. We are here for you.
At Perkins, we amplify the CVI experience every single day. Subscribe to our CVI Newsletter. Follow us on social media. Sign up for a 1:1 parent support call. Dive into our library of resources on CVI Now. No matter where you are, we’re right beside you.
8. Your support is crucial.
Our conference was an enormous success. Now, we need to continue to spread awareness of CVI—every day. Perkins confronts CVI through education, innovation, and collaboration. We equip our community with resources, tools, and support so that people with CVI are empowered to meaningfully access their world and define their success. Donate today to support our essential mission.
Missed the conference?
Not to worry! Purchase the plenary session recordings here, and explore topics that adults with CVI addressed at the 2024 CVI Conference, and our targeted takeaways for educators, families, and providers below.
