57 hours and 56 minutes. That’s how long it took three dads to drive across the country to raise money for their sons’ rare genetic disease.
Last week, Brett Stelmaszek, Kevin Frye and Peter Halliburton completed their second “cannonball run,” a challenge to drive from coast to coast in the shortest time possible, while live streaming the entire trip on YouTube and Twitch.
The three men drove from New York to California, starting at the Red Ball Garage in NYC and ending at The Portofino Hotel & Marina in Redondo Beach.
Along the way, they were able to raise $156,000 in donations to help fund research for SYNGAP1-related non-syndromic intellectual disability, more commonly referred to as SYNGAP1.
Last year’s “cannonball” raked in $150,000.
All donations go to the SynGAP Research Fund, a volunteer-based nonprofit organization that raises money for the illness.
“It took me a few months to plan and plot out [the livestream],” says Stelmaszek, a YouTuber who spearheaded the trip and has been fundraising for the condition for four years.
Kyler Himes, who works for Stelmaszek, also tagged along as the stream production manager.
“Inviting other SYNGAP dads who are also fundraising for the kids just made the most sense,” Stelmaszek adds.
What is SYNGAP1?
SYNGAP1 is a neurological disease that people are born with, and symptoms typically “appear gradually over the first few years of life, except in more severe cases,” according to Mike Graglia, founder of the SynGAP Research Fund and another dad of a child with the condition.
Though genetic, the illness typically occurs spontaneously in children and does not “run in families,” says Graglia.
Severity varies from patient to patient, and symptoms can include epilepsy, autism spectrum disorder, sleep issues, pain and severe behaviors, he says.
On average, Stelmaszek’s son has 60 to 100 seizures a day, and he isn’t able to walk independently for long periods of time. He’s also nonverbal which can sometimes lead to physical aggression towards others when he feels misunderstood.
“Our entire life revolves around caring for him because his needs are so severe,” he says.
Likewise, Frye and Halliburton each have a child with the rare condition, and their sons also experience multiple seizures each day and require a lot of care.
The dads had a fun approach to encouraging donations
To encourage people to donate to the cause, Stelmaszek partnered with different organizations and was able to offer up to $20,000 in prizes for people who donated during the livestream.
And for every $69 donated, the dads spun a wheel of consequences.
“There were things like you had to wear a mouth retractor that kept your mouth open for five minutes, or you had to eat one of those ‘Bean Boozled’ beans, and it could be any flavor. Or, you had to dress up in a costume at the next charging station,” he says.
At different milestone goals for donations, the challenges got even wilder.
When they hit $100,000, Stelmaszek and Halliburton got tattoos of the SYNGAP1 gene, the DNA code where the mutation is found, and at $150,000, Stelmaszek shaved his eyebrows off.
‘It’s not just a wing and a prayer’
Currently, there is no cure for SYNGAP1, and treatments can only be used to mitigate the symptoms that patients are experiencing, says Graglia.
“None of that is getting at the root cause of disease,” he says, “If we cure this disease, we need to find a drug to make the brain make more SYNGAP, and we are working on that right now.”
The SynGAP Research Fund invests 100% of donations into research to find a cure for the condition.
“SRF has committed to date about $3.7 million to different efforts. So if you think about it, these two cannonballs add up to $300,000, almost 10% of our total giving,” Graglia says.
“There are two biopharma companies who are working on SYNGAP1, so it’s not just a wing and prayer.”
Sign up now: Get smarter about your money and career with our weekly newsletter
Don’t miss:
