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Student Launches Spikeball Tournament To Raise Funds For Rare Condition Research

Carter Ellis, a Penn State freshman, is organizing a Spikeball tournament to raise money for a rare condition that hits close to home.

Ellis’ 17-year-old brother, Jake, has Usher syndrome, a genetic disorder that comes with mild to total hearing loss and retinitis pigmentosa in the eyes. He was born with 60% hearing loss and has worn hearing aids all his life.

“When he was 9, doctors discovered that he also had retinitis pigmentosa,” Ellis said. “That is where your peripheral vision slowly diminishes, like tunnel vision. In most cases, patients like him would go blind by [the age of] 35.”

Ellis and his family have been fundraising for the last three years, so Ellis decided to become more independent with his fundraising and take charge. This summer, he and his friends played a ton of Spikeball on campus. He organized his own tournament where every team chipped in $10 and the winning team received $240. Eventually, his friends encouraged him to do it again…but bigger.

“I was just trying to brainstorm ideas and I thought ‘Why not do it for charity?’” Ellis said. “I could obviously make a lot of money doing it. Why either keep [the money] for myself or give it just one person when it can go to a good cause?”

He then decided that he wants the fundraiser proceeds to go towards Massachusetts Eye and Ear — the hospital where his brother goes every other year for doctor’s appointments. In his last visit, doctors told him that they now offer a new treatment for those with Usher syndrome, which must be completed every six months, starting at the age of 18.

“[The treatment] stops the regression [of Usher syndrome symptoms], but it doesn’t completely stop it for good. They are also so close to finding a long-term cure,” Ellis said.

Ellis and 26 other volunteers have already raised $1,500 by just advertising and fundraising on their own time, but they are hoping to raise even more funds during the tournament.

Teams looking to enter will pay a $30 entry fee, which will take the form of a donation. On October 24, teams will check in at the HUB Lawn at 10 a.m before the games will start at 10:45 a.m.

The first round of games will feature a pool where each team will upload its score into the accounts they made on the website they used to sign up for the tournament. The website will then place them into their designated seed. A 30-minute break will be held before the single-elimination rounds begin.

Ellis and his team are still in the process of what exactly they will be offering at the event, but they are planning on selling water, snacks, and some sort of raffle, too. The tournament is set to end at 5 p.m, and closing statements and awards will start at 5:15 p.m. These times may be earlier depending on how fast the games go.

Members of the winning Spikeball team will receive $50 Amazon gift cards, and the person with the most raised money will also receive a free Spikeball set. Ellis said he and other fundraiser organizers will also be talking with the company of Spikeball later this week to see if the company will donate other prizes.

Teams looking to enter can register through the tournament’s Fwango page. Those who cannot participate in the tournament but still want to help out can donate to their GoFundMe.

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About the Author

Nicole Oronzio

Nicole is a sophmore majoring in journalism. She is from Aston, PA and loves hiking, watching movies, and trying new things. She has an obsession with her dog, Simba (aka. the love of her life). Just a fair warning: She will ramble on about literally any topic if given the chance. Follow her on Twitter and Instagram @nicoleoronzio or email her at [email protected]

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