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Shine a Light on Usher Syndrome

Shine a Light on Usher Syndrome

Empathy is a very important word in my family these days. We talk about what an empathetic person may act like, what they might say in certain situations. How do you truly put yourself in someone else’s shoes? I have built an entire organization around this word, knowing the significance it holds in my life and in the world.

My name is Nancy Corderman, a mom of four children, married my college sweetheart, several dogs, a cat, a textile designer, and the co-founder of a non-profit called kidz b Kidz (KbK). My close friend Jan and I created Kbk with the mission of teaching children how to be more empathetic using art to share personal stories.

KbK emerged mainly from personal experiences. Our pivotal experience happened at Boston Children’s Hospital where 2 of my children, Hannah and Tyler, were diagnosed with a bilateral hearing loss and consequently fitted with hearing aids. As my husband, David, and I processed the idea of this unexpected hearing diagnosis, we couldn’t help but be grateful that we were not dealing with something much worse. We realized then, the importance of teaching our children to open up their hearts to feel someone else’s story; Empathy.

Several years ago, our hearing diagnosis changed and took on something much greater than we could have imagined. Hannah and Tyler we're exhibiting night vision issues which lead to a clinical diagnosis of Usher Syndrome 2A. I don’t need to elaborate much to imagine how our family feels; Hannah and Tyler are going blind and deaf says it all. My mind gets overwhelmed with various fears and unanswered questions. The only weapon I have at the moment is Kidz b Kidz, built upon empathy for stories. Usher Syndrome is very rare, most people, including me, had never heard of it. My children are scared for their future, so I need to empower them in the present.

Shine a Light On Usher Syndrome is our answer, our hope. This is a campaign created after KbK met with the Usher Syndrome Coalition several times to identify the most important things we can do to help find a cure. Without a doubt, we need to find everyone in the world who has Usher Syndrome and get them to register and confirm their diagnosis with genetic testing. Then we can get trials going with the researchers around the world. How does all this happen? Empathy for Usher Syndrome. We need to give a face and a voice to this devastating disease so we can raise awareness and funds.

In conjunction with the USH Coalition’s Own the Equinox campaign, Kidz b Kidz and the Corderman family have hired photojournalist Evan McGlinn to photograph portraits of people with Usher Syndrome to give a face to USH. In addition, we will hold KbK Art Parties where participants can draw their feelings and the artwork created becomes the voices and stories of USH.

Shine a Light on Usher Syndrome has become a pillar of strength and optimism for my family and friends. We want to encourage everyone to help us shine a light in their own unique way. Draw a picture, light a candle, express yourself artistically and send us a photo. We will add this to our gallery of portraits, stories and art on our website as well as share it on social media and other creative ways. Our mission is to Shine a Light on USH so the world can see us before it is dark and silent.