Cindy Younan, founder of cvijourney.com and mother to Valentina (1.5 years), describes the day during her pregnancy when she found out about her daughter’s complications. There have been highs, lows and personal sacrifices since then, which Cin

Hindsight and Insight | Kira Brady | 16

Jun 6th, 2020 56m 42s

Kira Brady tells the journey to her son’s diagnoses, which include cerebral palsy (CP), periventricular leukomalacia (PVL) and cortical visual impairment (CVI). We marvel at how it can be so difficult to get a diagnosis even when, in hindsight,

The PhD and the IEP | Barbara Lopez Avila | 15

Apr 25th, 2020 51m 37s

Barbara Lopez Avila has a PhD in developmental psychology. But she says she still feels ill-prepared to help her son Logan navigate life with cortical visual impairment (CVI). How can that be? She writes in a recent blog post for the Pediatric

Grace Unfiltered | 14

Feb 17th, 2020 13m 52s

Grace (8) is a vibrant second grader with lots to say. She describes what it’s like to live with cortical visual impairment – the things that upset her and the special characteristics she relies on day-to-day. She says, “I’m not afraid to speak

Team Archer! | Cheyanne Marcy | 13

Dec 9th, 2019 1h 2m

Cheyanne Marcy has been an advocate on big stages, on everyday social media platforms and in day-to-day life on behalf of her son, Archer (5). She values action and advocacy – and has navigated not one, not two, but three state education system

This Mom With a Blog | Mia Carella | 12

Jul 24th, 2019 30m 7s

Mia Carella of thismomwithablog.com shares wisdom from the head and the heart, which comes from navigating life as a CVI mom / heart mom. (Her daughter Evalyn, 8, has cortical visual impairment and a congenital heart defect.) Mia describes the

Word Bubble Much? | Tommy Szalapski | 11

Apr 30th, 2019 21m 58s

Tommy Szalapski – Google accessibility engineer and CVI dad – has created a new app for CVI literacy. The Roman Word Bubbling project automates the tedious process of adding color outlining to letters, numbers and words, based on Dr. Christine

Rosalie, Small but Mighty| Stephanie Kung | 10

Mar 27th, 2019 59m 36s

Rosalie (1.5) has hydrocephalus, a build-up of fluid in the cavities deep within the brain, which comes with the risk of vision problems. She received a cortical visual impairment (CVI) diagnosis from an ophthalmologist who provided her parents

Emma’s Renaissance | Lynn Elko | 9

Feb 15th, 2019 45m 44s

When Emma (16) received a cortical visual impairment diagnosis at age four, CVI literature was not widely available. The consensus was “this is just what she has, live with it,” says her mother, Lynn Elko. Her family didn’t know great gains cou

Helping River Read | Judy Endicott | 8

Jan 24th, 2019 46m 58s

Judy Endicott works with her grandson River (9) on his reading skills, relying on her background as a special educator and continuing education in CVI principles and practices. How does she manage to keep up with his needs, including the countl

Mini-Episode | Year of the CVI Advocate | 7

Dec 19th, 2018 10m 45s

I’m reflecting on 2018. For me, this has been the Year of the CVI Advocate. My life has been transformed by my interactions with fellow CVI parent advocates – online, at conferences and through this podcast. From Start Seeing CVI Advocacy on Fa

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Mini-Episode | Year of the CVI Advocate | 7

Dec 12th, 2018 30m 28s

When Your Daughter Has a Visual Impairment, and Your Niece Does Too | Anna Ault & Lori Kinney | 6

Oct 31st, 2018 58m 3s

Sisters Anna Ault and Lori Kinney are raising daughters with visual impairments. One has cortical visual impairment, the other an ocular visual impairment. We discuss their parallel but unique experiences advocating for CVI and Leber’s congenit

Life With CVI and Perfect Pitch | Dagbjört Andrésdóttir | 5

Sep 23rd, 2018 33m 52s

Opera performance student Dagbjört Andrésdóttir gives us a glimpse into her life with cortical visual impairment, describing music and strong parental support as her saving grace. “I kind of knew always there was something, but I wasn’t sure if

What Happens When Things Go Right? | The Rastogi-Wilsons | 4

Aug 18th, 2018 50m 20s

Krish (6) received an early CVI diagnosis and guidance from a teacher of the visually impaired who knew how to intervene appropriately, based on his CVI Range score. With neuroplasticity and dedicated parents on his side, he’s heading to kinder

Going All In: From Phase I to Phase III | Alisha Waugh | 3

Jul 18th, 2018 41m 10s

When Alisha Waugh and her husband learned that their son Griffen (10) has a cortical visual impairment (CVI), they committed to improving his functional vision above all else – and with stellar results. Alisha puts her Perkins-Roman CVI Range E

The Early Days: A Mother's First Year on the CVI Journey | Rachel Bennett | 2

Jun 5th, 2018 41m 56s

Henry (5) has a new cortical visual impairment (CVI) diagnosis. His mom, Rachel, now understands why he is so frustrated. He can't interpret what he sees. Relying on the 10 characteristics of CVI, they infuse vision into everything they do. His

Testing. Are CVI Parents Out There? | The Marquardts | 1

May 17th, 2018 42m 58s

Grace (6) reads sight words, enjoys hearing chapter books and shows an affinity for math. Yet she can’t interpret illustrations in a children’s book or recognize the faces of her mother and father. Her parents on the struggles and joys of raisi

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