57 hours and 56 minutes. That is how lengthy it took three dads to drive throughout the nation to boost cash for his or her sons’ uncommon genetic illness.
Final week, Brett Stelmaszek, Kevin Frye and Peter Halliburton accomplished their second “cannonball run,” a problem to drive from coast to coast within the shortest time attainable, whereas dwell streaming your complete journey on YouTube and Twitch.Â
The three males drove from New York to California, beginning on the Crimson Ball Storage in NYC and ending at The Portofino Resort & Marina in Redondo Seashore.
Alongside the way in which, they had been in a position to elevate $156,000 in donations to assist fund analysis for SYNGAP1-related non-syndromic mental incapacity, extra generally known as SYNGAP1.
Final yr’s “cannonball” raked in $150,000.
All donations go to the SynGAP Analysis Fund, a volunteer-based nonprofit group that raises cash for the sickness.
“It took me a couple of months to plan and plot out [the livestream],” says Stelmaszek, a YouTuber who spearheaded the journey and has been fundraising for the situation for 4 years.
Kyler Himes, who works for Stelmaszek, additionally tagged alongside because the stream manufacturing supervisor.
“Inviting different SYNGAP dads who’re additionally fundraising for the children simply made essentially the most sense,” Stelmaszek provides.
What’s SYNGAP1?
SYNGAP1 is a neurological illness that individuals are born with, and signs sometimes “seem steadily over the primary few years of life, besides in additional extreme circumstances,” in response to Mike Graglia, founding father of the SynGAP Analysis Fund and one other dad of a kid with the situation.
Although genetic, the sickness sometimes happens spontaneously in youngsters and doesn’t “run in households,” says Graglia.
Severity varies from affected person to affected person, and signs can embody epilepsy, autism spectrum dysfunction, sleep points, ache and extreme behaviors, he says.
On common, Stelmaszek’s son has 60 to 100 seizures a day, and he is not in a position to stroll independently for lengthy intervals of time. He is additionally nonverbal which may typically result in bodily aggression in the direction of others when he feels misunderstood.
“Our complete life revolves round caring for him as a result of his wants are so extreme,” he says.
Likewise, Frye and Halliburton every have a toddler with the uncommon situation, and their sons additionally expertise a number of seizures every day and require loads of care.Â
The dads had a enjoyable method to encouraging donations
To encourage individuals to donate to the trigger, Stelmaszek partnered with completely different organizations and was in a position to provide as much as $20,000 in prizes for individuals who donated in the course of the livestream.
And for each $69 donated, the dads spun a wheel of penalties.
“There have been issues such as you needed to put on a mouth retractor that saved your mouth open for 5 minutes, otherwise you needed to eat a type of ‘Bean Boozled’ beans, and it could possibly be any taste. Or, you needed to costume up in a dressing up on the subsequent charging station,” he says.
At completely different milestone objectives for donations, the challenges obtained even wilder.
Once they hit $100,000, Stelmaszek and Halliburton obtained tattoos of the SYNGAP1 gene, the DNA code the place the mutation is discovered, and at $150,000, Stelmaszek shaved his eyebrows off.
‘It isn’t only a wing and a prayer’
Presently, there isn’t any treatment for SYNGAP1, and coverings can solely be used to mitigate the signs that sufferers are experiencing, says Graglia.
“None of that’s getting on the root reason behind illness,” he says, “If we treatment this illness, we have to discover a drug to make the mind make extra SYNGAP, and we’re engaged on that proper now.”
The SynGAP Analysis Fund invests 100% of donations into analysis to discover a treatment for the situation.
“SRF has dedicated up to now about $3.7 million to completely different efforts. So if you consider it, these two cannonballs add as much as $300,000, nearly 10% of our whole giving,” Graglia says.
“There are two biopharma firms who’re engaged on SYNGAP1, so it isn’t only a wing and prayer.”
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