One family raises awareness on rare disease day
Fri, 01 Mar 2013 04:28:59 GMT —
You've heard of cancer, AIDS and heart disease, but today is World Rare Disease Day. This day is focusing on the diseases that are not typically in the limelight.
One of these diseases is a syndrome called Dup 15 Q. This name is taken from the duplication of the fifteenth chromosome to make up for the one that is missing. This can cause speech issues, as well as issues with motor skills.
Ethan Luchsinger is a 12-year-old who lives with this every single day. His family is trying to make sure that this syndrome is not easily forgotten.
Kadi Luchsinger is Ethan's mother. "The premise was to wear jeans for rare "gene" day," says Luchsinger. "With our organization we took it to another level to wear blue and we have over three thousand people all over the world wearing blue today for DUP 15 Q."
Kadi started an online organization to raise awareness and money for this syndrome. She does this through the sale of blue shirts and donations. Her website has raised $15,000 in the past fifteen days. While some of this will be going to research, a large amount will going to help another cause.
"This summer we're actually hosting an international conference for families, actually at the Mall of America in Minneapolis," says Luchsinger.
This will help with airfare and hotels so that families from around the globe can gather together and find people who share the same experience of having a rare disease.
Ethan even had some words for the camera that he was so fascinated throughout my time there. "Thank you for wearing blue," says Ethan.