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7 things for CVI families to remember from the 2024 Perkins CVI Conference
From advocacy to empowerment, discover why parents say they left the 2024 CVI Conference with everything they needed.
In June 2024, the CVI community gathered for our biannual three-day CVI Conference at the Revere Hotel in Boston. The enthusiasm was palpable: We welcomed thought leaders, educators, providers, and families from 12 countries and 37 U.S. states to discuss meaningful research, spotlight change-making educational innovations, and to share unvarnished stories about lived experiences. In every panel, discussion, and group, the message was clear: CVI is receiving the attention that it deserves—and our work has just begun.
Our CVI families lead that charge. At Perkins, we center CVI voices, understanding that each individual with CVI is unique. We ground our resources in deep empathy and relatability. Although our conference was just a few days long, we bolster families year-round: offering advocacy paired with research; resources paired with personal stories; information paired with compassion, all through the lens of access and inclusion. We are here for you.
Here are key takeaways for families.
1. You are not alone.
Because CVI is still underdiagnosed and poorly understood, it’s completely natural to feel alone. However, CVI is incredibly prevalent, and we have data to back that up. The CVI Center at Perkins School for the Blind used medical claims data and advanced analytics from McKinsey & Company to uncover first-of-its-kind CVI prevalence data focused on kids and young adults with CVI in the United States. We found that there are more than 180,000 kids with CVI, although less than 20 percent are diagnosed. CVI is an epidemic and deserves to be treated as such.
A resounding motto from the conference: “If it’s not about CVI, make it about CVI.” Share these stats with providers, educators, and your community and learn how to use this new data to advocate for your child with CVI.
2. The NIH has our back.
We know that CVI is the leading cause of childhood blindness and low vision, and the NIH knows it, too. The NIH and National Eye Institute (NEI) are conducting interdisciplinary research on CVI to refine diagnostic criteria and coding. Funding is on the rise, topping out at nearly $3.5 million this year. Strategic priorities include:
- conducting clinical phenotyping to identify CVI biomarkers
- creating evidence-based, age-appropriate test batteries and a CVI classification system
- researching and disseminating effective clinician awareness strategies
- developing a CVI registry with functional and behavioral metrics and imaging data
- enhancing the ability to diagnose CVI quickly and accurately
- advancing the use of imaging to examine CVI causes and neural connections
3. The NIH has a working* definition of CVI.
A working definition of CVI is essential in understanding its mechanisms and legitimizing its prevalence. The NIH describes CVI in five ways:
- CVI encompasses a spectrum of visual impairments caused by an underlying brain abnormality that affects the development of visual processing pathways and is characterized by deficits in visual function and functional vision.
- The visual dysfunction in CVI is greater than expected by any comorbid ocular conditions.
- The visual dysfunction in CVI may manifest as lower- and/or higher-order afferent visual deficits, leading to characteristic behaviors in affected individuals.
- While CVI may be comorbid with other neurodevelopmental disorders, CVI is not primarily a disorder of language, learning, or social communication.
- The underlying neurologic insult of the developing brain may go unrecognized or undiagnosed until later in life.
*This definition is subject to change. Got feedback? Contact us with your thoughts and stay tuned for an upcoming research article that provides the full context for this working definition, and subscribe to our newsletter to be the first to know when it’s published.
4. The CVI Registry is a game-changer.
The CVI Registry is a key priority for NIH/NEI. This process is underway, with an inaugural meeting happening in June 2024. Developing a centralized registry will:
- characterize various presentations of CVI
- diagnose CVI more quickly and accurately
- document the scope and prevalence of co-occurring conditions
- identify outcomes that are the most meaningful to CVI’ers and families
- refine diagnostic batteries
- facilitate research and advancements
Want to learn more? Email [email protected]
5. Access, opportunity, and empowerment is everything.
More exciting things are happening in the CVI world in addition to the CVI Registry. Our conference’s theme was “Building Meaningful Recognition,” and this means increased advocacy and awareness. As a CVI family, your voice allows us to center CVI in the mainstream. This will:
- improve early identification and diagnosis
- establish diagnostic codes and criteria, making it easier to reach providers and work with insurance
- enhance availability and access to educational and state support services and providers with CVI expertise
- underscore the need for inclusive policies and address social risk factors to empower kids with CVI
As speaker and CVI parent Rachel Bennett said: “We must recognize and deeply know that CVI caregivers need the systems to work for their kids: the medical system, the educational system, and local and state services. It shouldn’t be this hard. But it is, especially in a society that actively chooses not to be fully accessible and inclusive. To have a child with CVI means they have a condition where there’s still such a huge lack of knowledge and awareness in the spaces our kids need to be in to learn and grow.”
6. Grief, anger, envy: All emotions are reasonable!
We understand that disability parenting can be rewarding, joyful, gratifying—and deeply fatiguing. You’re entitled to your emotions, and it’s healthy to acknowledge them. In the words of speaker and parent Amanda Griffith-Atkins: “You can feel angry at the system and love every single thing about your child.” This duality is completely normal and legitimate. Get parent support here.
You can feel angry at the system and love every single thing about your child.
– Amanda Griffith Atkins, MS, LMFT, disability parent
7. Your voice matters!
We have a lot of work to do. But big change happens in tiny moments. As Bennett said: “Every time you talk about CVI to somebody, it’s progress. Every time you advocate for your child, it’s progress.”
Fellow CVI parents shared the techniques we rely on to advocate for our kids, including:
- Communication skills: Clear and persuasive communication is essential, from articulating our ideas clearly and confidently to crafting compelling, precise written materials to share with school boards, special educators, policymakers, and more.
- Empathy: understanding and sharing the feelings of others to better represent interests and needs.
- Research skills: gathering, analyzing, and presenting information to support our efforts.
- Critical thinking: Assessing situations, identifying the key issues or pivotal ones, and developing effective strategies and solutions.
- Negotiation skills: finding mutually acceptable solutions and reaching agreements with stakeholders.
- Networking skills: building and maintaining relationships with key individuals and organizations that can support our advocacy efforts.
- Persistence and resilience: staying committed and motivated in the face of challenges and setbacks.
- Legal and regulatory knowledge: understanding the landscape we’re operating in so that we can effectively navigate and influence change.
Learn how to use your personal story to advocate and impact legislative change.
Dream big. Do not let anyone steal your dreams for your child. But make sure it’s your child’s dream and not your own. Leverage your child’s strengths, preferences, interests and what intrinsically motivates them. There are so many ways to have a good, meaningful, and joyful life. Stay persistent, stay focused, be flexible, but dream your child’s dream.
Mara LaViola J.D., CVI parent
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