Tuesday, November 29, 2022

Local Attorney Driving Across County Live on Stream to Raise Awareness, Raise Funds for Rare Genetic Disorder Research

By Alyssa Schnugg

News editor

alyssa.schnugg@hottytoddy.com

Local attorney Kevin Frye, center, joined two other fathers, Brett Stelmaszek, left, and Peter Halliburton, this morning to begin a three-day trip across the country to raise awareness for SynGAP1 genetic disorder. Photo provided by the Fryes.

Last year in October, local attorney Kevin Frye hopped into a Tesla Model X with two other men and drove across the country to raise awareness and money during the Cannonball for a Cure trip.

The entire trip was streamed live on Twitch and YouTube and they raised more than $150,000 for the SynGap Research Fund.

SynGAP1 is 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, 5, was diagnosed with SYNGAP1 disorder in December 2020.

This morning, Frye got back into a Tesla, this time a Model Y, with Brett Stelmaszek from Upper St. Clair, Pennsylvania – the owner of a tech-centered media production company and owner of a Tesla Model X and two other fathers with children diagnosed with SynGAP1.

The drive will end on Sunday at the Portofino Hotel in LA. Donations will benefit SynGAP Research Fund, which is committed to accelerating science to cure SYNGAP1 and to support families affected by the disease.

Their journey is being streamed again on YouTube, Facebook and Twitch.

Ashley Frye said she was glad her husband elected to do the Cannonball for a Cure for a second time.

“It was a wildly successful fundraiser and he was able to meet some other SynGAP families, which is very insightful when you’re dealing with a disease as rare as SynGAP1- there are only 1,135 patients identified worldwide,” Ashley said.

The trip is expected to take about 55 hours. In addition, the stream will feature giveaways from corporate sponsors including a top-of-the-line gaming PC.

They hope to surpass last year’s $150,000 in donations to fund the next phase of SRF’s drug discovery research with Rarebase, PBC. It’s possible that already approved FDA drugs exist which can help address the devastating effects of SYNGAP1, a rare, genetic disease. With over 1,000 affected people around the world, targeted treatments can’t come soon enough. Patients can experience medication-resistant epilepsy, autism spectrum disorder, physical and intellectual disabilities, and need lifelong, round-the-clock care. SRF’s work with Rarebase will uncover potential drug candidates.

“As we crossed the country live on YouTube/Twitch in 2021 the SynGAP community shared so much camaraderie, some families even joined us as we charged the Tesla along the way,” Frye said earlier this week. “That community is important, and I’m looking forward to making new connections this year. Finally, we all continue to hope for a better future for our children with the current pace of medical and scientific progress. One hundred percent of funds raised this year will go directly to a current SynGAP Research Fund grantee exploring potential therapies to improve the lives of our children.”

How to watch the Cannonball for the Cure trip:


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