57 hours and 56 minutes. It was a time when three fathers had to drive across the country to raise money for the treatment of their son’s rare genetic disease.
Last week, Brett Stelmaszek, Kevin Frye and Peter Halliburton completed their second “cannon test run”, a challenge of driving from coast to coast in the shortest time possible, while Live streaming the whole 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.
In the process, they were able to raise $156,000 to help fund research into SYNGAP1-related nonsyndromic intellectual disability, commonly known as SYNGAP1.
Last year’s “Cannon Bullet” grossed $150,000.
All donations go to the SynGAP Research Foundation, a voluntary nonprofit organization that raises money for medical treatment.
“It took me a few months to plan and plan [the livestream]”, said Stelmaszek, a YouTuber who led the trip and has been fundraising for the condition for four years.
Kyler Himes, who works for Stelmaszek, is also tagged as director of stream production.
“It makes the most sense to invite other SYNGAP dads who are also fundraising for the kids,” adds Stelmaszek.
What is SYNGAP1?
SYNGAP1 is a neurological disease that everyone is born with, and symptoms usually “appear gradually over the first few years of life, except in more severe cases,” according to Mike Graglia, founder of the Research Foundation SynGAP and another father of a child with the condition.
Despite being hereditary, the disease usually occurs spontaneously in children and does not “run in families,” says Graglia.
He said:
On average, Stelmaszek’s son has 60 to 100 seizures a day, and he can’t walk independently for a long time. He is also nonverbal, which can sometimes lead to aggressive behavior towards others when he feels misunderstood.
“Our whole lives revolved around caring for him because his needs were so serious,” he said.
Likewise, Frye and Halliburton both have a child with a rare condition, and their son also experiences multiple seizures every day and requires a great deal of care.
Dads have taken an interesting approach to encouraging donations
To encourage people to donate to a cause, Stelmaszek has partnered with various organizations and is able to award prizes up to $20,000 to those who donate during the live stream.
And for every $69 donated, fathers spin a rotation of consequences.
“There’s things like you have to put on a mouthpiece to keep your mouth open for five minutes, or you have to eat one of those ‘Bean Boozled’ beans, and it could be any flavor. Or, you have to dress up in a costume at the next charging station,” he said.
At different key contribution goals, the challenges become even more difficult.
When they reached $100,000, Stelmaszek and Halliburton tattooed the SYNGAP1 gene, the DNA code where the mutation was found, and for $150,000, Stelmaszek shaved his eyebrows.
‘It’s not just a pair of wings and a prayer’
Currently, there is no cure for SYNGAP1 and treatments can only be used to minimize the symptoms patients are experiencing, says Graglia.
“None of that is the root of the disease, if we’re going to cure this, we need to find a drug to make the brain make more SYNGAP, and we’re working on it,” he said. that right now”.
The SynGAP Research Foundation invests 100% of donations in research to find a cure for this condition.
“The SRF has committed about $3.7 million to various endeavors. So if you think about it, these two cannons add up to $300,000, almost 10 percent of their total,” says Graglia. I contribute”.
“There are two bio companies working on SYNGAP1, so it’s more than just a wing and a prayer.”
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