Empower yourself,
empower your child
We believe the best advocates for children with CVI are informed, empowered parents and families. Access research, resources, and community support to help you navigate your CVI journey with confidence.
Our philosophy
We believe in empowering individuals with CVI and their families, equipping them with knowledge, tools, and a supportive community to navigate the challenges of this often-misunderstood condition. Through collaboration with medical professionals, educators, and researchers, we strive to advance awareness, drive innovation, and promote evidence-based solutions that lead to better outcomes.
"Knowledge is power. When parents understand what CVI is and how it affects their child, everything changes. They can advocate effectively, support confidently, and ensure their child gets what they need to thrive."
​
— Dr. Nicola McDowell
FEATURED RESEARCH
The power of knowledge: parent empowerment research
Power is knowledge: empowering parents of children with cerebral visual impairment
Disability and Society, 2020 | Dr Nicola McDowell
​
This research explored how knowledge empowers parents of children with CVI to become effective advocates. Surveying parents internationally, the study found that many parents are left confused and unsure how to help their child due to lack of information during the diagnostic period. Parents who did receive information at diagnosis had more positive relationships with professionals, felt more empowered, and were more confident in advocating for their child's needs.
Key research findings
Understanding impact
Providing parents with accessible information at diagnosis helps them better understand how CVI affects their child's development.
Foundation for learning
Clear information serves as a tool for ongoing learning, helping parents deepen their understanding of CVI over time.
Building advocacy confidence
When parents receive relevant information about their child's specific visual difficulties, they gain the confidence to effectively advocate for their child's needs.
Collaborative relationships
Parents who receive early information are better able to cultivate strong, collaborative relationships with professionals supporting their child.
Dr Nicola McDowell's CVI blog series
Drawing from her lived experience with CVI, Dr Nicola shares personal insights, reflections, and perspectives on navigating life with CVI. Her blog series on CVI Scotland offers an authentic, first-hand look at the challenges and triumphs of living with this condition.
Topics covered:
-
Adapting to life with acquired CVI
-
Navigating education with CVI​
-
Living with CVI: Daily experiences
-
Impact on mental and physical health
-
Understanding different aspects of CVI
-
Sharing research findings ​
Join the Dr Nicola CVI community
Follow Dr Nicola on social media for lived experience insights, practical strategies for daily life with CVI and tips for navigating challenging environments.
Stories of empowerment: learn from the community
We want to hear stories of empowerment - moments when you found your voice, strategies that worked, breakthroughs that made a difference. Share what empowered you so others can learn from your experience.
Coming soon
We're creating a space for the CVI community to share empowerment stories - the strategies you discovered, the approaches that worked, the moments you felt confident advocating for yourself or your child. These are stories that can help others on their journey.
​
What we're looking for:
-
Moments when you felt empowered to advocate effectively
-
Strategies or approaches that made a real difference
-
Breakthroughs in understanding or supporting your child
-
Practical tips that helped in daily life or at school
-
Times when knowledge gave you confidence to create change
Join us in creating change
Whether you're a parent, professional, researcher, or supporter, there's a role for you in improving outcomes for children with CVI.
Education Disclaimer
The Austin McDowell Foundation provides educational information and resources only. We do not provide medical advice, diagnosis, treatment, or clinical support. All content is for educational purposes and does not replace professional medical or educational services. Always consult qualified healthcare professionals for medical concerns.