From NY to LA: Dads drive across the country to expand awareness for their kids’ rare disease
Three dads will embark Friday on a 3,000-mile trek across America. They’re on a very important mission: to cure a rare genetic disorder affecting their children.
Peter Halliburton, Brett Stelmaszek and Kevin Frye will live-stream their journey from New York, N.Y. to Los Angeles, Calif. inside a decked out Tesla Model-X to raise awareness and money for The SynGAP Research Fund (SRF), a charity dedicated to funding the research and development of treatments, therapies and support systems for SYNGAP1 patients.
They won’t be hard to miss either. The car will sport vibrant zebra stripes and the SRF logo as it makes its way to the Portofino Hotel in Los Angeles by Nov. 2.
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The charity event, known as Cannonball for the Cure, is a “very personal journey” for the trio, according to Stelmaszek.
“The honest truth is, if we’re not doing it, nobody else is going to do this,” Stelmaszek said. “Nobody else is going to go out and try to raise $150,000 on behalf of our kids.”
Although the trio will entertain audiences during the continuous live-stream with funny costumes, dares and giveaways, their main goal is to draw attention to this serious and rare disease that has unexpectedly brought their families closer together.
Halliburton, Stelmaszek and Frye formed a tight bond over the past few years during virtual “happy hour” chats with other parents who are also part of the SRF.
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“When you talk to other adults and other parents, they just don’t really get what we were all going through and living with on a day-to-day basis,” Halliburton said. “That group is really a blessing.”
For one, it allows parents to share their recommendations and best practices with each other, he said.
“Often times our doctors don’t even know what … the best answer is to something,” Halliburton said. “And so it’s the parents that have really become the experts in the disease.”
What is SYNGAP1?
According to the foundation, the disease is caused by a mutation on the SYNGAP1 gene and can lead to several neurological issues. Some symptoms of SYNGAP1 can include autism, sleep and behavior disorders, epilepsy and intellectual disabilities.
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However, “patients can experience medication resistant epilepsy, autism spectrum disorder, physical and intellectual disability, and need lifelong, round-the-clock care,” according to SRF’s website.
SynGAP Research Fund raised millions
The foundation was first formed in 2018 by Mike Graglia and his wife, Ashley, after their son, Tony, was diagnosed with the disease.
The Graglias cover all the overhead costs for the foundation, so every penny donated can go specifically towards the research and development of treatments and therapies that may be able to help patients live a better life.
The mission is to improve the quality of life of SYNGAP1 patients through the research and development of treatments, therapies and support systems.
Graglia, who quit his full time job a few years ago, has been working around the clock to accelerate the foundation’s mission. He knows all too well how vital it is to help families like his, the Halliburtons, Stelmaszeks and Fryes, whose lives have been upended by this disease.
“We as a fund and delegates of the fund are working like crazy on finding better medicines for our kids,” Graglia said.
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Over the past several years, the SRF, which claims to be the largest nongovernment funder of SynGAP research, has raised roughly $3.5 million in grants since being founded.
To add to Graglia’s hard work, Halliburton, Stelmaszek and Frye raised $150,000 in donations to fund drug discovery research with Rarebase during their first Cannonball for the Cure event last year.
Rarebase is in the process of looking drugs that have already been approved by the FDA to see if any drug currently on shelves would actually help patients with SynGAP.
This year, the dads hope to top that.