If a 1,200-mile trek from Maine to North Carolina doesn’t sound daunting enough — imagine doing it barefoot.

Next month, a man from the United Kingdom will attempt to do that.

Chris Brannigan plans to embark on the barefoot journey to raise money and awareness for Cornelia de Lange Syndrome, a rare genetic condition that affects about one in every 10,000 live births in the U.S. — including his 9-year-old daughter, Hasti.

“I decide to do this barefoot because Hasti’s condition makes life really difficult for her. Things that other children find easy, she finds really hard,” Brannigan said. “I thought, ‘If I’m going to do something I should do something that is really challenging and difficult as well just to put myself in her shoes.’”

According to the National Organization for Rare Diseases, CdLS is a congenital disorder that can have a wide range of symptoms, including physical abnormalities and delayed development.

The journey will begin in Bar Harbor on Aug. 31 and end in North Carolina around late October. Brannigan is scheduled to come through Brunswick around Sept. 6 or 7.

Brannigan will be representing his family’s charity, Hope for Hasti, on the journey — which was started in 2020. He plans to average 20 to 35 miles a day, carrying a 55-pound backpack with a tent, food and clothes.

“I’m not a super fit guy, not an athlete or anything like that. I’m just a desperate dad who is doing the only thing he knows how as a solider used to marching,” Brannigan, who also serves as a major with the British Army, said.

No specific fundraising goal has been set for this trek, but all proceeds will go towards gene therapy research for the syndrome. In total, about $3.5 million is needed to make the treatment a reality, according to Hasti’s mother, Hengameh Brannigan.

Last year, Chris Brannigan raised nearly $800,000 on a similar 700-mile, barefoot trek across the U.K.

The mantra Brannigan would ask himself on the trek: “how far would you go for your child?”

“When I found myself making excuses to not go any farther, I just remembered that being able to choose to stop is a luxury I have that Hasti doesn’t have. She can’t just choose to not have a rare condition,” Brannigan said. “As long as she doesn’t have a choice, I didn’t give myself one. I just kept going, step after step.”

Brannigan chose to start in Maine because of The Jackson Laboratory, a research institute in Bar Harbor that has worked to develop gene therapy for Hasti.

Dr. Cathleen Lutz, the director of the Jackson Lab’s mouse repository and rare and orphan disease center, is currently testing research and therapy methods for CdLS on mice.

“These various mouse models that have these precise genetic mutations will allow us to test those therapeutic strategies and hopefully get to the point where we can get into a clinical trial with FDA approval,” Lutz said.

Lutz said that there have been some highlights in the research so far, and with each test the team is learning more about what can and can’t be done.

For more information on Brannigan’s journey, visit hopeforhasti.org

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