Rock football names Ellsworth honorary captain
Sept. 23, 2016
SLIPPERY ROCK, Pa. - Shawn Lutz, head coach of the 10th ranked Slippery Rock University football program, has announced that the team has signed 15-year old Coraopolis native Billy Ellsworth as honorary captain for SRU's Sept. 24 home game against Gannon University.
"I mean, you look at a guy like Billy and see what he brings to the table and it was a no-brainer," said Lutz. "This is a guy that knows what it means to battle adversity and he's someone that we think can help our football team."
Billy, his parents Terri and Bill, and family friends will be special guests of The Rock football program Saturday night as part of the annual "Coach to Cure MD" initiative that is sponsored by the American Football Coaches Association.
The SRU football staff has supported the Coach to Cure MD mission and has worn patches on their sleeves for at least one game in each of the last eight seasons, but will ramp up their involvement this year.
Billy was diagnosed with Duchenne muscular dystrophy at an early age. Duchenne inhibits the body's ability to produce the protein dystrophin, which muscles require to function. Most people with the disease lose the ability to walk by their teenage years. As it progresses, the disease impedes the function of organs, including the heart, ultimately becoming fatal, most often in the late 20s or early 30s.
This will be the fifth year in a row that Billy has been involved with the Coach to Cure MD initiative. He has been a guest at games hosted by Robert Morris, Carnegie Mellon and Thiel in past years.
"We have a jersey waiting for him and the guys are pumped up about having him join us on the field this weekend," said Lutz.
"We've done this four other times at other schools, but no one has given Billy his own jersey and treated us like this. We're really looking forward to it," said Terri Ellsworth.
Billy has plenty of ties to SRU even before he joins the team this weekend. Two of his former teachers and close family friends, Krystle and Candace Fava, are graduates of the University's special education program. They will be with him Saturday night, along with their mother Barb Fava, and another close family friend, Chris Cialella. Billy also currently works with SRU special education professors Robert Isherwood and Joseph Merhaut in his special education program at Montour High School, where he is a sophomore.
The prospect of Billy reaching 10th grade without needing to be in wheelchair on a full-time basis was bleak. There were no approved treatments for the disorder when he was a young boy. Little did his family know that Billy would become a pioneer in the world of muscular dystrophy and help lead the charge toward finding that treatment.
Five years ago Billy was invited to be one of 12 boys in the country to take part in a clinical trial for what was billed as the first potential drug that could delay the onset of the disorder. For the last five years Billy has received a weekly injection at Children's Hospital in Pittsburgh. The results of the clinical trial have been so promising for Billy, who is the only child from Pennsylvania in the trial, that he has become a leading activist in the fight to get the drug approved for use by other individuals with muscular dystrophy.
Billy and his family have been advocating for the drug for years, going so far as to testify at a hearing last April before the Food and Drug Administration (FDA) with hopes of getting it approved.
At that hearing, to show how much strength and stability Billy has been able to retain while on the drug, he threw a football to another patient in the courtroom.
"Just look at that picture," said Lutz. "I wouldn't be able to throw a football under that much pressure and he just hopped up there and tossed it in front of a packed room. Our guys can't wait to ask him about that pass."
Billy and his family, along with the families of the other boys in the trial, finally received news this week that their efforts have paid off. On Sept. 19, the FDA announced that the drug, Exondys 51, was granted an accelerated approval, which will provide a pathway for patients outside of the clinical trial to get the drug.
The news has led to a whirlwind of excitement for Billy's family, which has been interviewed by Bloomberg News, the Washington Post, the Pittsburgh Post-Gazette and the Pittsburgh Tribune Review, among others, this week alone.
While the news of the drug's approval is exciting for individuals with the disorder, it will also mean that the patients in the clinical trial will now have to pay for the drug. The family is hopeful that insurance will cover most of the cost, but a Go Fund Me has been set up by the family to help with the costs of the treatment and with making the family home safer for Billy.
Billy and his guests will be on the field with SRU during team warm-ups Saturday and he will join The Rock's captains when the team comes out of the tunnel for the opening coin toss.
Saturday's game is expected to feature a large crowd for the PSAC West opener between two unbeaten teams. It is the capstone event to the annual Slippery Rock VillageFest, the annual White Out game and the annual Hall of Fame game, in addition to being part of the Coach to Cure MD weekend.
MEDIA CONTACT: Jon Holtz | 724.738.4925 | firstname.lastname@example.org