Adelphi event to raise money and awareness
Ethan Demmers was born to Dustin and Betsy Demmers on Dec. 3, 2008. When his parents realized their son was not progressing with rolling over and sitting up as his sister had done, Ethan was tested and completed physical therapy. Right before Thanksgiving 2013, the Demmers got the news that their son had been diagnosed with Duchenne muscular dystrophy.
After the diagnosis was made, Dustin started a Facebook page and meetethan.com to share Ethan’s story.
“I hadn’t heard much about muscular dystrophy and nothing about Duchenne’s muscular dystrophy so I wanted to get everyone talking about it,” said Demmers, an English teacher at Floral Park Memorial High School. “I am hoping to bring this conversation to everyone and hopefully get something accomplished to save my son.”
What better way for a teacher to get everyone talking then through the help of his former students? It didn’t take long for Demmers’s former students to support their teacher’s struggle.
In the next week, one of FPM’s alumni, Argie Pagiavlas, is putting on a “Ride for Ethan Cycle-A-Thon” on Nov. 6 from 5 to 8 p.m. at Woodruff Hall Half Court at Adelphi University, to raise money and awareness for Duchennes muscular dystrophy and the Demmers family.
“I had him [Mr. Demmers] my senior year for his media class,” said Pagiavlas, the community service director for C.A.L.I.B.E.R (the community service organization at Adelphi University). “He was an amazing teacher, so full of energy and passion, and I’m sure all his students feel the same way. It was a lot to take in hearing about his son’s condition; no one deserves this, and especially not this amazing family.”
The event is a fun, fundraising cycle class to benefit the Demmers family. For $5 a ride, all proceeds go directly to the Demmers family.
Before this “Cycle-A-Thon,” FPM alumni JR Alonzo and Kyle Vidasola, with the help of Demmers’s colleague, Anthony D’Amico, organized a 200-mile-plus bike trek to help support Ethan and raise awareness about Duchennes muscular dystrophy. This occurred from Oct. 1 to 5 and has now spawned even more rides through the help of FPM faculty member, Kristen Lucano, for a “Ride For Ethan Part 2.”
“I wish I had the proper words to express my gratitude and awe at the way this community just scooped up this cause,” Demmers said of his students and colleagues’ help. “They have done so much for us, so much that no one single person knows everything that has been happening. People have sent me thoughts and prayers and support for Ethan in innumerable public and private ways.”
While the funds these events raise are of course of great important to the Demmers family and other families battling this disease, there is something to be said for what simply raising awareness does for eventually finding a cause, so that in the future, kids like Ethan can live in a world without Duchenne muscular dystrophy.
“C.A.L.I.B.E.R wants to not only directly fundraise for the Demmers family, but raise awareness for muscular dystrophy and how it affects other families around the world,” said Pagiavlas. “We want to have participants understand why they’re riding: for this amazing family, the countless other amazing families out there,and to find a cure for Duchenne muscular dystrophy.”
In addition to the Ride for Ethan and Cycle-A-Thon events, Demmers has been working on an event to help all of the Duchenne muscular dystrophy boys. It will be a fundraiser event for the parent project for muscular dystrophy ppmd taking place on Nov. 15 at Mulcahy’s of Wantagh. Tickets are available for $40 and more information is available at meetethan.com and the event page on Facebook, “TKA’s Parent Project for Muscular Dystrophy PPMD Benefit.”
While money and spreading awareness is of great value to families like the Demmers who have been impacted by the disease, there is even more people can do to help Ethan from their own homes, according to the educator.
“If anyone wants to help, he or she can visit meetethan.com,” Demmers explained. “There are links to websites that are helping fight this disease. This is also information about who is doing the latest event. Most of what people see in this fight is what others have done for us, on their own urge to help, from their own hearts. That is why I remain deeply grateful.”
