Man with rare skin condition shared his story to inspire Mason students

Shane DiGiovanna has never gone a day in his life without bandages. He was born with a rare skin condition known as EB or epidermolysis bullosa, which means his skin is so fragile just touching it could break it.

Last month, Shane shared his story with Mason fourth grade students, encouraging them to ask questions and giving strategies for supporting friends who may not be exactly like them.

“When I went to a TED Talk at Mason High School in August, I just happened to sit in the front row right beside DiGiovanna,” said fourth-grade Gifted Intervention Specialist Amy Hammond. “After the first few minutes of talking with him, he shared with me that he has his own website. I wanted to learn more about his story so I got to doing a little bit of research on his site.”

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Shane endures hours of extremely painful bandaging every day, but despite his debilitating disability, he is a student at Rice University and is “constantly striving to go where no one has gone before!” He recognizes that his dream of becoming an astronaut may not be possible because of his physical limitations, however, he has set his eyes on someday working for NASA to support the space program.

According to his website, DiGiovanna founded ShaneTalks to help people learn about the importance of kindness and hard work by showing how to turn adversity into opportunity.

“This is a man who could stay in bed, but instead he is an absolute rockstar,” shared Hammond.

DiGiovanna offered to come into talk to Hammond’s students, and Hammond was extremely impressed with Shane’s resume. A graduate of Seven Hills School in Cincinnati, he was a National Merit Finalist, AP student, and has an impressive talk history, even speaking at a Neil Armstrong event. Armstrong was so impressed that he even sent him a space suit of his to keep after Armstrong passed.

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