Dads highway journey raised $156,000 for uncommon genetic illness

57 hours and 56 minutes. That is how lengthy it took three dads to drive throughout the nation to lift 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 potential, whereas stay streaming your entire journey on YouTube and Twitch. 

The three males drove from New York to California, beginning on the Pink Ball Storage in NYC and ending at The Portofino Resort & Marina in Redondo Seaside.

Alongside the best way, they had been in a position to increase $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 number 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 youngsters simply made essentially the most sense,” Stelmaszek provides.

SYNGAP1 is a neurological illness that persons are born with, and signs usually “seem steadily over the primary few years of life, besides in additional extreme circumstances,” in keeping with Mike Graglia, founding father of the SynGAP Analysis Fund and one other dad of a kid with the situation.

Although genetic, the sickness usually happens spontaneously in youngsters and doesn’t “run in households,” says Graglia.

Severity varies from affected person to affected person, and signs can embrace 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 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 a number of care. 

To encourage individuals to donate to the trigger, Stelmaszek partnered with totally 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 stored your mouth open for 5 minutes, otherwise you needed to eat a type of ‘Bean Boozled’ beans, and it may very well be any taste. Or, you needed to costume up in a fancy dress on the subsequent charging station,” he says.

At totally different milestone targets 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.

At present, there isn’t any remedy 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 explanation for illness,” he says, “If we remedy 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 remedy for the situation.

“SRF has dedicated thus far about $3.7 million to totally different efforts. So if you concentrate on it, these two cannonballs add as much as $300,000, virtually 10% of our complete giving,” Graglia says.

“There are two biopharma corporations who’re engaged on SYNGAP1, so it isn’t only a wing and prayer.”

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