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Apr. 25, 2018

TOPIC: Featured News, Patient Stories, Get Involved

Chris Ulmer: 2018 Rare Impact Award Honoree

Posted by Lisa Sencen


2018 Rare Impact Award Honoree, Chris Ulmer

“Every time I meet someone new, I am focused on going into the interaction with an open mind and accepting heart,” says Chris Ulmer, co-founder and front man behind the viral internet video project, Special Books by Special Kids (SBSK).


As a special education teacher, Chris was completely energized by his students and knew they could do incredible, inspirational things. One day he and his girlfriend, Alyssa, decided to interview the students on camera so they could share their stories with the world. In an effort to spearhead a global dialogue on neurodiversity, what was first conceptualized as a series of story books and then began as a few homemade videos quickly grew into a substantial library of viral, professional videos, reaching an audience of 1 million followers on Facebook in just two years.

Since SBSK began in 2015, Chris has interviewed hundreds of medically diverse children, many of whom have rare diseases. He uses these interviews to help the public get to know the person behind the disease. Each video interview is seen by thousands of people on the internet, giving those viewers the opportunity to, as Chris puts it, “develop empathy, understanding and appreciation for the differences that make the human race so vibrant and unique”.2018 Rare Impact Award Honoree, Chris Ulmer and child.

Aside from generating awareness for the rare disease community using social media, the SBSK interviews have helped individuals from facing isolation in their communities or from being bullied at school. The videos have helped the interviewees’ peers to reshape their thoughts and opinions about the interviewees’ worth, intelligence, beauty and humor. Chris says, “Whole communities have shifted and really embraced these individuals wholeheartedly. Their whole world has changed for them in a way.” 2018 Rare Impact Award Hon

A 501(c)3 organization seeking to normalize the diversity of the human condition under the pillars of honesty, respect, mindfulness, positivity and collaboration, Special Books by Special Kids now has over 430,000 subscribers on Youtube, 314,000 followers on Instagram, and close to 2 million followers on Facebook. As Chris looks forward to the future for SBSK, he hopes to travel the world conducting interviews and sharing many more stories.

“We view what we do as a conversation that is only made sweeter by the addition of new voices, perspectives and cultural beliefs,” says Chris.

NORD is honored to present Chris Ulmer with a 2018 Rare Impact Award.

Join us during NORD’s 35th Anniversary Celebration presenting the Rare Impact Awards on May 17!
Learn More.