Get Involved
CVI Advocacy and Awareness
Why your voice matters
CVI is the 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 and youth with CVI are seen and appropriately served by educators, therapists, medical providers, and policymakers.
Your voice matters. We can change the world for children and youth with CVI. Here are two ways to get started.
Join PCVIS and contribute to a committee
Professional Development Committee
The purpose of the professional development committee is to 1) Advance interdisciplinary education and research and 2) Improve public and professional awareness of CVI in children and youth.
Its big audacious goal? To provide virtual professional development opportunities on PCVIS platforms.
Board contacts
Medical subgroup: Melinda Chang, Lynn Elko, Karen Harpster
Education subgroup: Jonathan Graves, MaryAnne Roberto
Top 3 Initiatives
Increase awareness of CVI among professionals through presentations at national meetings, including PCVIS as a resource
Digest and deliver scientific articles about CVI through social media accounts on a regular basis
Conduct online survey of professionals about their learning needs
Legislative & Policy Committee
The purpose of the legislative and policy committee is to 1) Advocate for governmental policy that improves quality and quantity of vision services available to children and youth with CVI and 2) Advocate for appropriate allocation of resources to allow for improved medical and educational vision services for children and youth with CVI.
Its big audacious goal? To pursue a mandate for offering compensatory services to students with late identification of CVI.
Board contacts
Kathryne Hart, Mara LaViola
Top 3 Initiatives
Establish Action Committees in every state
Draft legislation for early screening and identification of CVI
Address vision impairment eligibility in the state
Marketing & Communication Committee
The purpose of the marketing and communication committee is to 1) Enhance dissemination of information and its communication among and between CVI stakeholders and 2) Improve public and professional awareness of children and youth with CVI.
Its big audacious goal? To get an editorial on CVI in the New York Times.
Board contacts
Lindsay Hillier, Sharon Lehman, Stephanie Steffer
Top 3 Initiatives
Leverage interests, talents, and connections of committee members to improve awareness of CVI
Develop an inventory of parent groups, professional societies, government entities, and educational institutions that may impact children and youth with CVI
Develop press release “package” that can be at the ready to share about PCVIS
Membership Committee
The purpose of the membership committee is to 1) Build our membership base and 2) Engage a growing group of members in the advancement of strategic goals.
Its big audacious goal? To grow PCVIS membership to 1,000 members, including a variety of membership types and associated benefits.
Board contact
Mary Zatta
Top 3 Initiatives
Explore increasing membership fees
Identify potential membership levels and determine their benefits (e.g., Pre-Service Student/GraduateStudent, Group/Corporate, Family, Individual with CVI)
Increase membership by 25% by gaining new members and renewing lapsed members
Use your CVI story as a catalyst for change
A Guide for CVI Advocates: Using Personal Stories to Impact Legislative Change
Sharing personal experiences can be a powerful catalyst for change. Read this Guide for CVI Advocates to learn how to use your narrative to activate legislative change at the state level, with a special focus on the importance of understanding the political context and building allies across the aisle.
