A British Army major is embarking on a walk across the American east coast to raise money for research into Cornelia de Lange Syndrome, a genetic disease affecting his daughter. Chris Brannigan is currently looking to raise £100,000 on his journey, of which he has already raised over half.
41-year-old Chris Brannigan began his 1,200-mile “Barefoot March” in Bar Harbor, Maine this past August and will end it at the Marine Corps Base Camp Lejeune in Jacksonville, North Carolina in late October. The British major, who is stationed at Tidworth Barracks in Wiltshire, arrived in the United States shortly before beginning his fundraising effort.
The effort is dedicated to raising money for The Jackson Laboratory’s Rare and Orphan Disease Center in Bar Harbor, with whom the family began working several years ago. This was spurred by their daughter, Hasti, who was diagnosed with Cornelia de Lange Syndrome (CdLS) in 2019.
CdLS results from a random, typically non-hereditary genetic mutation. It’s estimated to affect one in every 10,000 live births in the US, and can severely impact a person’s physical and mental development, as well as their life span. The severity of the condition can vary widely and may include distinctive facial characteristics, intellectual disability, growth delays, and limb defects.
There is no known cure or treatment.
“It is multi-systemic, so it affects Hasti in many different ways,” Brannigan told The Independent. “It causes seizures, cognitive disability [and] learning disability. It has reduced Hasti’s growth velocity, which means she is required to take daily growth hormone supplements.
“It affects her speech and language,” he continued. “She didn’t begin speaking until she was five, so her ability to communicate is down. It means lots of things that other children find easy are quite difficult for Hasti. It’s quite isolating.”
Brannigan’s overall goal is to raise £2.5 million to fund a research project and future clinical trials at Jackson. As of September 26, he’d raised £53,215 of his £100,000 goal for this specific trek, which will be added to the £500,000 he earned on a similar walk completed last year from Land’s End to Edinburgh in Scotland.
He and his wife, Hengameh Delfaninejad, launched the Hope for Hasti charity in 2020. They have been raising money via a GoFundMe campaign and a JustGiving charity page.
“The research and treatment for Hasti and for children with CdLS is going really well,” Brannigan told the BBC. “We know the treatment is safe and we’re currently testing it to understand how effective it is.
“The problem is, clinical trials and to actually be able to give it to children costs millions and millions of pounds, and we just don’t have that sort of money,” he added.
Pre-clinical trials are currently underway on mice at Jackson to determine if there is a potential for gene therapy to be safe and effective in humans. Proceeds from Brannigan’s fundraising efforts will go toward the completion of this research and future clinical trials.
Brannigan is traveling with a 55-pound survival kit, which includes a tent in which he sleeps each night. He’s also been offered beds to sleep in, thanks to his contacts and those he meets along his journey.
Hasti’s favorite Teddy bear is also accompanying him for the journey. It sits in his backpack, and he promised his daughter to bring it out every night as his bedtime companion when he sets up camp.