Wednesday, January 26, 2022

Oxford Father Joins Road Trip to Bring Awareness, Raise Funds for Rare Genetic Disorder Research

By Alyssa Schnugg

News editor

alyssa.schnugg@hottytoddy.com

Kevin and Ashley Frye with their sons, Liam and Nathan. Nathan was diagnosed last year with SynGap1 disorder. Photo provided

As an attorney and former Lafayette County Supervisor, Kevin Frye is no stranger to talking in front of large groups of people, whether in a courtroom before a jury or when he was a supervisor, a board room full of his constituents.

However, starting on Oct. 6, he will be speaking to the world via live streaming while traveling from New York to California in a Tesla Model X during the Cannonball for a Cure trip.

He, and two other fathers, will be driving 2,900 miles in hopes of raising money and awareness for SynGAP1 – a rare genetic disorder caused by a variant of the SynGAP1 gene. It 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.

Frye and his wife, Ashley, have two young boys Liam and Nathan.

Nathan, 4, was diagnosed with SYNGAP1 disorder in December 2020.

“We noticed he had difficulty swallowing when he was around 8 months old,” Kevin Frye told Hottytoddy.com recently. In the years that followed, Nathan received several other broad diagnoses involving development delays from various doctors.

However, in May 2020, the Fryes noticed that Nathan would blink and roll his eyes back at times. The action was so quick, Frye said they first thought it to be a twitch.

“We finally caught it on camera and sent it to his pediatrician,” he said. In Jackson, a pediatrician recognized the blinking as a form of epilepsy. A genetic test revealed that Nathan had SynGAP1.

The men will ride from New York to California in a Tesla Model X. Photo provided.

There are only about 808 known cases worldwide and less than 250 in the United States.

“As a parent, it was both devastating and heartening to finally know what the underlining problem was,” he said.

The Fryes became involved in the SynGAP Research Fund where they met other families with children diagnosed with SynGAP1, including Brett Stelmaszek from Upper St. Clair, Pennsylvania – the owner of a tech-centered media production company and owner of a Tesla Model X.

The men will leave New York on Oct. 6 and their journey will stream on YouTube, Facebook and Twitch.

“I’m really looking forward to it,” Frye said. “Not only to help awareness and funding but also to spend some real quality time with two other guys to really talk about our kids and get to know each other.”

The goal is to raise $100,000 for the SynGAP Research Fund and to raise awareness about what the fund addresses.

The trip is expected to take about 60 hours. In addition, the stream will feature giveaways from corporate sponsors including a top-of-the-line gaming PC.

“We’ll connect with other SynGAP families along the way, do some live-streaming with our kids and talk to some researchers,” Frye said. “By raising awareness there are lots of people out there that are undiagnosed. We hope as we raise awareness more people will seek out genetic testing. With the diagnoses comes a lot of hope.”

Visit https://www.justgiving.com/fundraising/ufdcure to make a donation.

How to watch the Cannonball for the Cure trip:


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