Episode 8: Disabilities and Rare Diseases Advocacy with Stephanie Duesing

In the episode, I interview Stephanie Duesing, author and CVI advocate. CVI is the number one cause of visual impairment in the world, yet not many people have heard about it. In this interview, Stephanie shares her journey and challenges as a parent of a child with CVI. She discusses how she has built awareness for the condition and the challenges she has faced in the process. She also shares what young people like us can do to bring light to the issues we care about.

If you want to learn more about CVI, check out the links below:

https://www.nei.nih.gov/about/news-and-events/news/vision-loss-children-whose-eyesight-may-be-2020-requires-new-diagnostic-and-teaching-strategies

https://www.optometrytimes.com/view/getting-to-the-heart-of-pediatric-vision-loss-and-blindness

https://cviscotland.org/

https://www.perkins.org/our-work/cvi/

https://www.sciencedirect.com/science/article/abs/pii/S0028393221002359

https://www.aph.org/product/vision-and-the-brain-understanding-cerebral-visual-impairment-in-children/