Wednesday, December 8, 2021

Cannonball for the Cure Nets $150K

A trio of fathers, with one being from Oxford, drove across the country last week in a Tesla in an effort to raise funds and awareness of SynGAP1 – a rare genetic disorder caused by a variant of the SynGAP1 gene.

Oxford attorney Kevin Frye joined two other fathers and drove 2,900 miles in a Tesla Model X during the first Cannonball for a Cure. The entire trip was streamed online on various social media platforms.

The three men raised $150,000 that will go to SynGAP Research Fund in hopes of finding a cure.

Frye’s son Nathan, 4, was diagnosed with SYNGAP1 disorder in December 2020.

SynGAP is a neurological disorder characterized by moderate to severe intellectual disability that is evident in early childhood. The earliest features are typically delayed development of speech and motor skills, such as sitting, standing, and walking.

The men didn’t stop to sleep. They took turns driving while also responding to comments from people in their live stream.

“It was so hard to be in a car for that long,” Frye said. “But it was also so much fun. I had a great time getting to meet these other dads. And along the way, we had opportunities to meet up with other families.”

The only time they stopped for longer than a few minutes was to charge their Telsa, which was owned by Brett Stelmaszek, who organized the event as a dad with a child with SynGAP.

“I think it was a bonding experience for everybody involved with this,” Frye said. “The most interesting thing, everybody comes from all these different walks of life, right? You have a very diverse group of people that have this really strong bond around our children and this disease that they’ve all got. It doesn’t matter your social status or your class or your job or whatever. It’s just really neat to see that many people come together in support of something.”

More than 800 people donated during the three-day trip.

Screen grab from Twitch stream.

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