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Spotlight Shined on The Bohring-Opitz Syndrome Foundation From Special Books by Special Kids

February 5, 2017

The Bohring-Opitz Syndrome (BOS) Foundation, Inc. is excited to announce the rare disorder has been gaining international attention this week.  Carrie Hunsucker, Co-Founder of the BOS Foundation and her daughter Hazel, who is diagnosed with BOS, were the subject of a video produced by the popular Special Books By Special Kids. 
 
Chris Ulmer, founder of Special Books by Special Kids, interviewed Hazel and her mom as part of his video series featuring neurodiverse individuals.  The interview demonstrated the importance of acceptance and the amazing connection and non-verbal communication that occurred as a result.  Ulmer, known as Mr. Chris, said it was “one of the most beautiful moments of my entire life.”
 
The video was broadcast on Facebook, along with other social media platforms, gaining over 300,000 views on Facebook alone.
 
Special Books by Special Kids is a global multi-media movement that spreads empathy, understanding, and acceptance for neurodiverse individuals.  Mr. Chris’s popular video series highlights the joys, needs, and struggles of the special needs community.

Bohring-Opitz Syndrome is an extremely rare genetic disorder with fewer than sixty cases worldwide.  This syndrome is diagnosed by genetic testing and is a mutation in the ASXL1 gene.

The BOS Foundation is thankful for Mr. Chris and his organization for spreading awareness of this rare disorder.
 
To view the video, please visit: Special Books by Special Kids on Facebook
 
To learn more about the BOS Foundation, please visit:  www.bos-foundation.org
 
To learn more about BOS, you can also visit: www.bohring-opitz.org

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