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CVI Advocacy and Awareness

Why your voice matters
CVI is leading cause of pediatric visual impairment in the developed world, but the medical and educational communities have been slow to respond. Raising awareness and advocating for CVI is imperative to ensuring children with CVI are seen and appropriately served by educators, medical providers, and policy makers. Individuals with CVI have a right to visual access, education, and social inclusion. Our children matter. Their education matters. They are capable. They can be independent, creative and productive citizens of this world.

We need more educators, school systems, leaders of medical, therapeutic, and blind/visually impaired organizations, and policymakers at all levels of government talking about kids with CVI. Tell everyone you know about CVI. Contact your representatives. Speak with medical providers. Reach out to a university vision program near you. Get colleagues, friends, or family members to join PCVIS.

Your voice matters. We can change the world for children with CVI.

Save the date for our annual members’ meeting. This will be a working meeting, led by a facilitator who will assist PCVIS members in translating our mission statement into action. We want to hear your voice, so please join us.

CVI Awareness Month: September
CVI is the leading cause of pediatric visual impairment. September is dedicated to raising awareness of CVI. As a parent or professional, every time we describe to CVI to someone who has never heard of it, we are spreading awareness. The more school communities, medical professionals, and legislators learn about CVI, the more opportunities change systems to better serve children with CVI. Think about how you want share your stories and your expertise about CVI this coming September. Use the hashtags #CVIawareness and #CVIsplaining on social media.

Start Seeing CVI (created by a CVI parent) is a website and blog dedicated to raising awareness of and advocating for children with CVI. Check out the post from the first CVI Awareness Month.

CVI Literacy Awareness Month: April
Students with CVI require a specific approach to literacy. The month of April is dedicated to fostering a better understanding of how to effectively teach literacy to students with CVI. The majority of children with CVI can learn how to read visual print or symbols using an educational approach based on the student’s CVI Range score and the 10 Characteristics of CVI. See our section for educators [link to page].

This April, consider sharing your stories and expertise on the path to literacy for children with CVI. When on social media, use the hastags #CVILiteracy and #CVI10Characterisitcs.

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