Where We’ve Been and Where We’re Going…
While PCVIS’ 10th anniversary was so regally adorned with a distinguished and decadent sheet cake, the true accomplishment of the 10th Annual Meeting was the participation of members and a renewed commitment to achieving our strategic planning goals. The energy in the room was charged with first-hand experience, informed recommendations for best practices, and fresh ideas for momentum. If you were unable to make it on October 2, we’d like to share a snapshot of our discussions below. Most urgently, we’d like to invite you to determine how you’d like to exercise your role as a member in the upcoming year. The best way to celebrate where we’ve been is to ensure that where we are going continues to uphold our mission to transform outcomes for children and youth with CVI.
The anniversary cake featured the PCVIS logo. It was red velvet, in case you're wondering!
A Year in Review
The Annual Meeting kicked off with a thorough review of PCVIS’ active year. With the election of 7 new Executive Board members, a new Executive Director at the helm, and a robust agenda, PCVIS had a lot to report. The highlights:
Strategy: Reviewed and prioritized the PCVIS strategic plan objectives; Developed strategic plan committees and leadership
Education: Reviewed and updated educational materials (flyers for medical practitioners, educators/TVIs, and therapist audiences)
Professional Development: Sponsored two CVI Conferences (Perkins and Innovations in CVI)
Advocacy: Endorsed the EDVI Act; Developed the CVI Advocacy Guide
Operational Business Review and Celebrations
We reviewed financials and voted on key amendments to our bylaws, now updated for PCVIS membership to review.
We showcased PCVIS celebrations–exciting leaps forward for PCVIS families and their children, rising new leadership for individuals with CVI, new advocacy ventures for our partners and families. In many ways, these are not one-time achievements, but the ongoing manifestations of the audacious and unwavering hard work of PCVIS families and teams.
Serving New Populations
In February 2024, Lindsay Hillier and a colleague traveled to Nunavut, Canada, to provide CVI assessments and support to families and other professionals. By collaborating with families and local educators, they hope to create inclusive environments that empower Inuit children with CVI to thrive and reach their full potential.
Inspiring With Musical Gifts
Zach LaViola won a Council of Exceptional Children “Yes, I Can Award” for his music. “I am proud because I work hard to perform and do a good job,” he says. “I feel like I am representing all people like me, who have complex support needs.”
A CVI Documentary
In the short film Acting Normal With CVI, international CVI advocate and opera singer Dagbjört Andrésdóttir shows audiences what its like to live life and break barriers with CVI.
AAC Research
Communication Science Disorders and Human Computer Interface researchers from Penn State University acquired a two-year grant to develop and test prototype technology that shifts the burden of access from the AAC user to the technologies. Emma, who has CVI and uses AAC, was the pilot user of the biosensor system and through her participation proved out the theory, application, and use.
Learning to Swim
“This past summer, Krish learned how to swim — like jump into a pool of eight feet of water and go into the ocean and float type-of-swim!” says his mother, Gunjan Rastogi-Wilson. “I’m so proud of him for working hard to reach his goal!”
Finding Kids with CVI
In just two years, special education advocate Mara LaViola helped 23 children finally receive a diagnosis of CVI and secure vision impairment eligibility under IDEA — life-changing milestones that will open new doors for these children and their families.
Real Talk Teen Group
Pediatric VIEW launched the first CVI peer advocacy group for teens with CVI. Participants join the virtual meeting from around the US for one hour, once a month. Topics include: Making and sustaining friendships, using assistive technology, starting conversations, advocating for needs in class and community, navigating new friends’ houses, parties, and tricky social situations.
Strategic Planning Committee Presentations and Breakout Focus Groups
After sharing key initiatives and audacious goals per committee, each of the four Strategic Committee leads invited current committee members and interested new members to break into focus groups around the room. For the remainder of the Annual Meeting, each focus group examined the current state of affairs for each committee, rolled up their sleeves, and designed practical next steps toward achieving our goals in the upcoming year.
1 Membership Committee
- Developed next steps for sharing information and membership engagement
- Designed a plan for engaging expired and current membership
- Determined strategic campaigns for membership growth in Spring 2025
- Discussed alternative solutions to membership dues
2 Professional Development Committee
- Discussed logistics for developing PCVIS channels for sharing educational and clinical research
- Discussed the establishment of partnerships with supporting universities for professional development opportunities
- Discussed logistics for developing a database/hub of research for educators, medical professionals, related service providers
3 Legislative/Advocacy Committee
- Discussed the need and process for developing state-mandated infant screening protocols
- Discussed developments on the Cogswell-Macy Act and potential in-roads for collaboration
4 Marketing & Communication Committee
- Discussed a plan for increasing PCVIS' social media presence across networks
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- prioritizing existing channels and methods
- creating a wish list for new approaches for sharing information / raising awareness
- Established a plan for leveraging the work of the Professional Development Committee
- Planned to create a "press kit"
5 Fundraising Committee
- Actively developing fundraising campaign efforts for Spring 2025
- Seeking a Treasurer. If you or someone you know would be interested in serving in this capacity, please reach out via [email protected]!
