CLEARFIELD, Pa. (WTAJ) –“CMT is a debilitating neuro-muscular disease that affects more than 3 million people worldwide,” says Jeana Sweeney, Director of Development for the Charcot-Marie-Tooth Association.
23 year-old Cierra Kephart from Clearfield is battling a disease that is incurable called Charcot-Marie Tooth Disorder, a degenerative nerve disease.
“I don’t have the use of my hands or my feet,” Kephart says.
It’s a disorder that she was diagnosed with when she was eight years old.
“It attacks the long peripheral nerve that runs to the hands and to the feet, and as the nerve dies, the muscle around, they atrophy,” Jeana Sweeney adds.
Kephart says growing up with the disease made it hard for her to walk, forcing her to make a tough choice when she was 16.
“My life choices were to either be in a wheelchair or to continue walking,” Kephart continued.
“I chose the wheelchair because I didn’t want to hit me head off the ground, because everytime I fall I’d smack my head off the ground.”
But despite those setbacks, she wants to become an advocate on the disease. A Paddle Party, or auction style fundraiser, will be held July 12, to raise money for her to potentially get testing and treatment with a trip to see an Iowa specialist on CMT.
“[I’ll] find out if I can get stem cell therapy, or gene cell therapy,” Kephart explained.
“The testing will also help other people who have the same disability as I do, find out how far along their prognosis is.”
The Paddle Party will be held at St. Barbara’s parish hall in Houtzdale, from 1 pm to 4 pm. Those who want to donate can reach out her via Facebook.