These dads drove over 57 hours, raised $156,000 for their kids’ rare genetic disease

57 hours and 56 minutes. That's however agelong it took 3 dads to thrust crossed the state to rise wealth for their sons' uncommon familial disease.

Last week, Brett Stelmaszek, Kevin Frye and Peter Halliburton completed their 2nd "cannonball run," a situation to thrust from seashore to seashore successful the shortest clip possible, portion live streaming the full travel connected YouTube and Twitch. 

The 3 men drove from New York to California, starting astatine the Red Ball Garage successful NYC and ending astatine The Portofino Hotel & Marina successful Redondo Beach.

Along the way, they were capable to rise $156,000 successful donations to assistance money probe for SYNGAP1-related non-syndromic intelligence disability, much commonly referred to arsenic SYNGAP1.

Last year's "cannonball" raked successful $150,000.

All donations spell to the SynGAP Research Fund, a volunteer-based nonprofit enactment that raises wealth for the illness.

"It took maine a fewer months to program and crippled retired [the livestream]," says Stelmaszek, a YouTuber who spearheaded the travel and has been fundraising for the information for 4 years.

Kyler Himes, who works for Stelmaszek, besides tagged on arsenic the watercourse accumulation manager.

"Inviting different SYNGAP dads who are besides fundraising for the kids conscionable made the astir sense," Stelmaszek adds.

SYNGAP1 is simply a neurological illness that radical are calved with, and symptoms typically "appear gradually implicit the archetypal fewer years of life, but successful much terrible cases," according to Mike Graglia, laminitis of the SynGAP Research Fund and different dada of a kid with the condition.

Though genetic, the unwellness typically occurs spontaneously successful children and does not "run successful families," says Graglia.

Severity varies from diligent to patient, and symptoms tin see epilepsy, autism spectrum disorder, slumber issues, symptom and terrible behaviors, helium says.

On average, Stelmaszek's lad has 60 to 100 seizures a day, and helium isn't capable to locomotion independently for agelong periods of time. He's besides nonverbal which tin sometimes pb to carnal aggression towards others erstwhile helium feels misunderstood.

"Our full beingness revolves astir caring for him due to the fact that his needs are truthful severe," helium says.

Likewise, Frye and Halliburton each person a kid with the uncommon condition, and their sons besides acquisition aggregate seizures each time and necessitate a batch of care. 

To promote radical to donate to the cause, Stelmaszek partnered with antithetic organizations and was capable to connection up to $20,000 successful prizes for radical who donated during the livestream.

And for each $69 donated, the dads spun a instrumentality of consequences.

"There were things similar you had to deterioration a rima retractor that kept your rima unfastened for 5 minutes, oregon you had to devour 1 of those 'Bean Boozled' beans, and it could beryllium immoderate flavor. Or, you had to formal up successful a costume astatine the adjacent charging station," helium says.

At antithetic milestone goals for donations, the challenges got adjacent wilder.

When they deed $100,000, Stelmaszek and Halliburton got tattoos of the SYNGAP1 gene, the DNA codification wherever the mutation is found, and astatine $150,000, Stelmaszek shaved his eyebrows off.

Currently, determination is nary cure for SYNGAP1, and treatments tin lone beryllium utilized to mitigate the symptoms that patients are experiencing, says Graglia.

"None of that is getting astatine the basal origin of disease," helium says, "If we cure this disease, we request to find a cause to marque the encephalon marque much SYNGAP, and we are moving connected that close now."

The SynGAP Research Fund invests 100% of donations into probe to find a cure for the condition.

"SRF has committed to day astir $3.7 cardinal to antithetic efforts. So if you deliberation astir it, these 2 cannonballs adhd up to $300,000, astir 10% of our full giving," Graglia says.

"There are 2 biopharma companies who are moving connected SYNGAP1, truthful it's not conscionable a helping and prayer."

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