Next week, Peter Halliburton will ride in a Tesla Model X as it heads coast-to-coast in 60 hours on a Cannonball Run.
Halliburton, a McKinney resident, and two other dads will start the 2,900-mile trip Oct. 6 in New York and end in Redondo Beach, Calif., on Oct. 8, with one goal in sight: raising awareness for a rare genetic disorder called SynGAP1.
Their trip in the Tesla, wrapped with information about SynGap, will take them from the Red Ball Garage in New York to the Portofino Hotel in Redondo Beach near Los Angeles. The fastest Cannonball Run was accomplished in 2016 at 25 hours and 39 minutes, with an average speed of 112 mph in order to be able to cross the continent in that time.
But the trio is not aiming to set any records. The dads are instead driven by a common desire to raise awareness and money for the SynGAP Research Fund. They hope to raise $100,000 to go toward biotech company Rarebase’s research to develop a screening to detect the disease.
“We feel really fortunate to have received a genetic diagnosis so quickly on this journey,” Halliburton said. “It drastically has improved our hope.”
Halliburton and his wife, Lindsay, have a 4-year-old son, Carter, who was diagnosed with the condition two years ago, after genetic testing. There are only 808 cases documented worldwide, and about 250 in the United States, Halliburton said.
At 9 months old, doctors found Carter began missing developmental milestones. He was diagnosed with epilepsy at 21 months before the testing showed Carter had SynGAP1, “a genetic epilepsy in which his brain lacks a critical protein required for proper development,” Halliburton said.
The neurological disorder is marked by moderate to severe intellectual disability.
“We’ve gone through challenging periods earlier, when Carter had over 100 seizures per day,” Halliburton said.
Now, he’s doing better, Halliburton said, while on a combination of medications as well as an FDA-approved CBD oil called Epidiolex.
Halliburton is the director of development for the SynGAP Fund, a volunteer position. He also works in cybersecurity sales for California-based Palo Alto Networks.
Halliburton and the other dads, Brett Stelmaszek of Pittsburgh, Pa., and Kevin Frye of Biloxi, Miss., who also have children with SynGAP diagnoses, will be live-streaming the drive on Stelmaszek’s YouTube channel, UFD Tech.
