Dad On 1,200 Mile Fundraising Walk For Daughter's Gene Therapy Makes Stop In Bucks County

LEVITTOWN, PA — Chris Brannigan is not from around here — but Levittown is one of many places he's seen on his journey to fund treatments for his daughter and other kids with the same rare genetic disease.

He's walking 1,200 miles barefoot along the East Coast to raise both awareness of his cause and money for research into gene therapy.

Hasti, Brannigan's 9-year-old daughter who loves dancing and dreams of being a chef, was diagnosed with Cornelia de Lange Syndrome a few years ago. Her parents started the nonprofit Hope for Hasti to fundraise toward research into therapies and treatments for people with CdLS.

According to the Hope for Hasti website, CdLS is characterized by reduced growth, global developmental delay, difficulty eating, speech and language difficulties, hearing problems, and limb abnormalities. Many with the disease also experience severe anxiety and depression.

"Part of the reason why I’m having to take this walk is because there’s just no funding from government or pharmaceutical companies to create treatments for children like Hasti, because it’s not profitable," he told Patch. "But so long as we take the view that treatments are only worthwhile while they’re profitable, children like Hasti will never ever receive treatments, and parents like my wife and I will have to continue to undertake these insane tasks so that our kids can enjoy happy and healthy futures."

He aims to raise £2,500,000 for research that will allow The Jackson Laboratory to develop a gene therapy and conduct clinical trials. The JAX Rare and Orphan Disease Center created a special model for researching the rare disease, and the Brannigans have collaborated with their researchers since founding their charity.

Brannigan began his walk, with 55 lbs of kit on his back, from the JAX facility in Bar Harbor, Maine in August. He plans to end up in Jacksonville, North Carolina on Oct. 31.

"It's been incredibly difficult so far, to be honest," he said Tuesday afternoon. "I'm 28 days in and over 500 miles."

A major in the British Army, Brannigan already completed a 700-mile barefoot march in the U.K. in 2020 and raised £600,000 for Hope for Hasti. (Pop legend Taylor Swift even sent a message to Hasti and her dad after learning about his walk). But he said this route has presented new challenges.

"Most of this journey I’ve been walking on my own, really, because I just don’t have a support network in the United States, and it can be a bit lonely," he said.

Though he covers about 22 miles daily, those without that kind of stamina are still welcome to keep him company for stints of his walk.

"I’m really keen to have people come and walk with me if they want and join me for half a mile, or five miles," he said.

On Thursday, Brannigan will make his way from Levittown (he's not sure where exactly he'll depart from) to the Children's Hospital of Philadelphia. There, he'll be meeting with doctors from one of the few CdLS specialist units in the world. Representation from JAX, and other members of Hope for Hasti's scientific advisory board, will attend the meeting virtually.

"We thought that it was really important that we stop there and have an opportunity to speak with them, share what we’re doing to help those who have CdLS, and see if there’s a way we can collaborate with the hospital as we move forward," Brannigan said.

Should Brannigan raise the needed funds, he said the hope would be to start efficacy testing later this year, and start clinical trials for kids like Hasti by spring of 2022.

"One of the issues we’re contending with is that CdLS gets worse for children that have it from about age 12, and Hasti’s almost 10, so we’re really racing against the clock to get this therapy for her before her condition gets any worse," he explained.

The gene therapy would involve inserting the correct copy of a gene into the cells of people with CdLS, to compensate for a dysfunctional HDAC8 gene.

The Jackson Laboratory is grateful for Brannigan's work to support these trials.

“While families going through the day-in, day-out struggle of caring for a child with a rare disease shouldn’t have to carry the additional burden of fundraising, it is unquestionable that Chris’ barefoot march will bring necessary attention and donations to support this ongoing research," said Cat Lutz, Ph.D., who directs the Rare and Orphan Disease Center.

To learn more or donate to Hope for Hasti, visit the charity's website.

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