Wednesday, September 2, 2015

Thank You Shawn Willis Fundraiser News Review

We would like to thank our long-term member, Shawn Willis, for organizing and hosting the terrific fundraising awareness event! Below is the article written by Bill Cresenzo published in The Times News:http://www.thetimesnews.com/article/20150829/NEWS/150828617/11669/NEWS
Friday Night Race Raises Awareness, Funds For Skin Disease
Around 200 people walked or ran in a 5-K fundraiser coordinated by owners of Triad Chick-fil-A.
Growing up in Alabama,  Shawn Willis lived with a rare and obscure disease that, at least  for himself and his parents, didn't have a name.
"I remember purple-like balloons sitting on top of my feet," he said." My head became so swollen, I couldn't hold it up."
Finally, when he was eight years old, a doctor finally gave a name to the disease that had made the boy so sensitive to light that he couldn't be in the sun without devastating damage.
It's called Porphyria, and it afflicts only about one in 250,000 people. According to the Mayo Clinic, it is a "group of disorders that result from a buildup of natural chemicals that produce porphyrin in your body. Porphyrins are essential for the function of hemoglobin."
There is no treatment, although Willis said one is now on the horizon, and no cure.
Willis and others want to change that.
On Friday evening, up to 200 people walked or ran in a five-kilometer fundraiser that was coordinated by owners of Triad Chick-fil-A. Willis owns the restaurant on University Drive, the site of the run/walk.
Organizers hoped to raise at least $7,000 for the American Porphyria  Foundation.
Willis cannot stay in the sun without a wide-brimmed hat, sunglasses, gloves, long sleeve shirts and pants. He has to wear a mask when he's out in the
Growing up was hard, he said - "Imagine going to school as a sixth-grader wearing a sombrero and garden gloves" -  but now, he keeps a keen sense of humor.
Otherwise, he said, he would become a recluse like so many who have the diseases.
He gets strange looks when he wears a mask, he said, particularly when he is at the airport or anywhere where security is a concern.
"There are people who who become bitter and live like hermits," he said. "They don't leave the house because of the way people treat you. But you can say, 'You know what? I'd rather be out here and made fun of rather than not to be out here."
Tristan Sterling of Timberlake volunteered at the event with his mother, Jennifer Spencer and brother, James Burnette.
"This really helps raise awareness," he said.



"Remember....Research is the key to your cure!"

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