Parents’ road trip raised $156,000 for a rare genetic disease

57 hours 56 minutes. That’s the time it took three parents to drive across the country to raise money for their sons’ rare genetic diseases.

Last week, Brett Stilmazek, Kevin Fry and Peter Halliburton completed their second “Missile Race,” a challenge to drive from coast to coast in the shortest possible time, while broadcast live The entire journey is on YouTube and Twitch.

The three men traveled from New York to California, starting at the Red Bull garage in New York City and ending at the Portofino Hotel and Marina in Redondo Beach.

Along the way, they were able to raise $156,000 in donations to help fund research into non-syndromic intellectual disability associated with SYNGAP1, more commonly referred to as SYNGAP1.

And the “cannonball” earned $150,000 last year.

All donations go to SynGAP Research Fund, a volunteer-based nonprofit that raises funds for the disease.

“It took a few months to plan and plan [the livestream]’ says Stelmaszek, a YouTuber who led the journey and raised money for the condition for four years.

Kyler Himes, who works at Stelmaszek, has also been featured as Broadcast Production Manager.

“Inviting other SYNGAP parents who are also children’s fundraisers to make a lot of sense,” adds Stelmaszek.

What is SYNGAP1?

SYNGAP1 is a neurological disease people are born with, and symptoms usually appear “gradually over the first few years of life, except for the most serious cases,” according to Mike Graglia, founder of the SynGAP Research Fund and another father of an affected child. the condition.

Although the disease is genetic, the disease usually occurs spontaneously in children and does not “run in families,” Graglia says.

Severity varies from patient to patient, and symptoms can include epilepsy, autism spectrum disorder, sleep problems, pain and extreme behaviors, he says.

On average, a Stelmaszek son suffers from 60 to 100 epileptic seizures per day, and cannot walk independently for long periods of time. He is also nonverbal and can sometimes lead to physical aggression towards others when he feels misunderstood.

“Our whole life revolves around taking care of him because his needs are so severe,” he says.

Likewise, both Frye and Halliburton have a child with a rare condition, and their sons have multiple seizures every day and require a lot of care.

Parents had a fun way of encouraging donations

To encourage people to donate to the cause, Stelmaszek partnered with various organizations and was able to provide prizes of up to $20,000 to people who donated during the live broadcast.

And for every $69 donated, parents spin the wheel of consequences.

“There were things like you had to wear a mouth bandage that kept your mouth open for five minutes, or you had to eat one of your Bean Boozled cereal, and it could have any flavor. Or, you had to wear a costume at the next charging station.” .

In different goals for donations, the challenges are becoming more difficult.

When their price hit $100,000, Stelmaszek and Halliburton got a tattoo of the SYNGAP1 gene, the DNA code where the mutation was found, and for $150,000, Stelmaszek shaved off his eyebrows.

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