Dad walking from Maine to N.C. barefoot to raise research money for daughter’s rare disease
BAR HARBOR, Maine (WABI) - Over the next few days, you may see a barefoot man in a yellow shirt and military fatigues walking on the side of the road.
His name is Chris Brannigan.
He’s a serving soldier in the British Army and also a father to a little girl who’s been diagnosed with Cornelia de Lange Syndrome- a rare, potentially life-limiting disease that has no cure or treatment.
He calls it his third tour of duty.
Maj. Brannigan, who has served twice in Afghanistan, left Bar Harbor Tuesday morning on a 1,200 mile barefoot walk from Maine to North Carolina to raise money to continue researching the disease that affects his 9-year-old daughter, Hasti.
“Having a child with a rare disease is a journey, and it’s really scary, and it was a journey to figure out what was going on, get a diagnosis, understand how we could help, and now this incredibly difficult journey to raise $3.5 million to create a therapy. So I felt like I had to do something that was long and arduous and difficult, and to be honest, she’s, she’s really my role model. You know, she faces her difficulties with a smile on her face, and I’m going to try and do the same,” Brannigan said.
Brannigan has been working with the Jackson Lab for the past two years, and they’ve made significant progress toward creating a gene therapy treatment for CdLS. But the family needs to raise nearly $3.5 million to continue funding research which could ultimately provide treatment and hope for Hasti and others living with life-limiting genetic diseases, 95% of which currently have no treatment at all.
“And it’s not because they’re so complex that they can’t have treatments, it’s just that they’re tiny communities, and they don’t receive the attention they deserve because it’s not profitable enough for pharmaceutical companies, etc.,” Brannigan said.
“I think when parents have a diagnosis of a rare disease for children, it’s overwhelming at first, and then you see them sort of gather themselves and assemble into patient base foundations, and they’re tenacious, they’re unstoppable, and they really want to work with the scientific community to do all that they can in looking for therapeutics,” said Cat Lutz.
Brannigan is carrying 55 pounds of military gear with him, everything he needs to camp out overnight in order to keep costs down so every cent raised can go toward research.
“If people see a weird guy any in a tent on the side of the road, it’s probably me. You know, just let me sleep or give me a drink of water, that’d be great,” Brannigan said.
Brannigan expects the barefoot walk to take up to two months. On this his third tour of duty, he welcomes anyone who wants to join him in the fight.
“I’d like families to realize my child could be their child, and it could be their next child, and if they could do anything to help, please do,” Brannigan said.
For more information Army Major Brannigan’s journey, including social media links to follow his progress and a link to donate to the cause, visit hopeforhasti.org.
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