Next week, Peter Halliburton will be driving a Tesla Model X from coast to coast on a Cannonball Run in 60 hours.
McKinney’s Halliburton and two other fathers will make the 2,900 mile journey that begins October 6th in New York City and ends October 8th in Redondo Beach, California with one end goal in mind: to increase awareness of rare genetics sharpen disorder called SynGAP1.
Her ride in a Tesla, packed with information about SynGap, takes her from the Red Ball Garage in New York to the Portofino Hotel in Redondo Beach near Los Angeles. The fastest Cannonball Run was completed in 2016 with 25 hours and 39 minutes and an average speed of 112 miles per hour in order to be able to cross the continent in that time.
However, the trio does not want to set any records. Instead, the fathers are driven by a shared desire to raise awareness and money that goes to the SynGAP research fund. On the trip, they hope to raise $ 100,000 to fund research at biotech company Rarebase to develop a screen to detect the disease.
“We’re really happy to have a genetic diagnosis so quickly on this trip,” said Halliburton. “It has improved our hopes dramatically.”
Peter Halliburton will ride a Tesla Model X with two other fathers on a cannonball run from coast to coast to raise awareness of SYNGAP1.(Peter Halliburton)
Halliburton and his wife Lindsay have a four-year-old son, Carter, who was diagnosed with the disease after genetic testing two years ago. Only 808 cases have been documented worldwide, with around 250 in the United States, Halliburton said.
At nine months of age, doctors discovered that Carter was starting to miss developmental milestones. He was diagnosed with epilepsy at 21 months of age before tests showed Carter had SynGAP1, “a genetic epilepsy in which his brain lacks an important protein necessary for proper development,” Halliburton said.
The neurological disorder is characterized by moderate to severe intellectual disability.
“We used to go through challenging times when Carter had over 100 seizures a day,” Halliburton said.
He’s feeling better now, Halliburton said while taking a combination of medications plus an FDA-approved CBD oil called Epidiolex.
Halliburton is Head of Development for the SynGAP Fund, a volunteer position. His actual job is cybersecurity sales for Palo Alto Networks, based in California.
Halliburton and the other two fathers, Brett Stelmaszek from Pittsburgh, Pennsylvania, and Kevin Frye from Biloxi, Miss., Who also have children diagnosed with SynGAP, will broadcast the ride live on Stelmaszek’s YouTube channel UFD Tech.