Sitting on the sidelines, hearing the screams of the crowd, the announcer talking about different plays and watching two touchdowns take place, a boy in a yellow T-shirt is determined to share his message.
Ethan Pyles, 14, came to Shippensburg University Saturday, partially for football, but also to make people aware of a disease called muscular dystrophy.
Through Coach to Cure MD, Pyles and Sandra Katzin, Pyles’ mother, were able to be a part of the game. Pyles got to toss the coin at the beginning of the game and sat on the sidelines during the game.
Coach to Cure MD is a partnership between the Parent Project Muscular Dystrophy (PPMD) and American Football Coaches Association (AFCA). PPMD is a charity devoted specifically to Duchenne muscular dystrophy (DMD).
“One reason the AFCA was drawn to Coach To Cure MD was because of the unique parallels between Duchenne, a disorder which robs young men of precious muscle strength, and college football, a game where young men are at the peak of their muscle strength,” according to the Coach to Cure MD website. Coach to Cure MD was founded in 2008 as a way to raise money for DMD, as well as to raise awareness about muscular dystrophy.
Katzin said the organization wants people to understand muscular dystrophy, specifically DMD, since that is what Pyles has. Muscular dystrophy, specifically Duchenne, is “characterized by progressive muscle degeneration and weakness,” according to the Muscular Dystrophy Association’s (MDA) website.
Muscular dystrophy is caused when the body does not make a protein called dystrophin, which keeps muscle cells intact. It mostly affects boys, but can also affect girls in rare cases, according to the MDA website.
Katzin said Pyles is an ambassador for the MDA, but not for himself. Katzin stressed Pyles wants to help his friends.
Pyles was a part of a Food and Drug Administration (FDA) trial run of a drug called eteplirsen, brand name Exondys 51. Katzin said there was some controversy with the FDA, but now he is back on eteplirsen.
Katzin said Pyles first reaction to his medicine was not about his own benefit. In fact, it was “Can my friends use this medication now?”
Katzin said she was happy he was back on the drug because he was still able to walk. Katzin said DMD can kill people as early as their 20s. She said this is the hardest to deal with, wondering how long you have with your children.
“We need all the help we can get,” Pyles said, “and want all the donations we can get.”
Katzin stressed her son is just a 14-year-old boy at the end of the day. Pyles said he enjoys football and would love to go to a Denver Broncos game. Katzin also added he loves basketball and video games.
Pyles’ face lit up when he watched touchdowns scored right in front of him.
“Thank you for having me here and I really enjoyed being here today,” Pyles said.