Chris Brannigan is taking off his boots for a 1,200-mile barefoot walk down the eastern seaboard of the United States in an effort to raise funds for the creation of a gene therapy treatment that could help patients battling Cornelia de Lange Syndrome (CdLS ).
On August 31 at approximately 8:30 a.m., Brannigan, a major in the British Army, will begin his journey at The Jackson Laboratory headquarters in Bar Harbor, Maine.
The location is meaningful: he’s starting at the independent, nonprofit biomedical research institution to highlight JAX’s role in creating an extremely relevant rare disease model to help researchers better understand CdLS and test gene therapies that could transform the lives of children living with this rare disease – including his 9-year-old daughter Hasti. The cost for new rare disease treatments is prohibitively high for individual families, so Brannigan hopes his trek will build awareness for CdLS and rare diseases in general while he gathers donations to fund JAX’s research and upcoming clinical trials.
Such a long, arduous walk is daunting, and he expects to finish his U.S. march in Jacksonville, North Carolina on October 31, 50 days after he begins. He will march a barefoot marathon every day carrying 55lbs of his kit, including his trusted one-man tent which he will be sleeping in.
Hasti, who one day hopes to be a chef and a dancer, was diagnosed with CdLS in 2019. The disease is a rare genetic condition that affects around one in 20,000 births and results from a random genetic mutation which is not typically inherited. CdLS can affect many parts of a person's development, both physical and mental, including issues in the formation of forearms and hands, anxiety, learning disabilities, premature aging, selective mutism, thoughts of self-harm, and more. As a result, most children affected by CdLS require life-long care and support. Armed with the passion to find answers for this little understood disease, Brannigan and his wife, Hengameh, founded a charity, Hope for Hasti, in January 2020 to raise funds to create a gene therapy for CdLS.
“The Brannigans’ commitment to Hasti, and to finding a cure for CdLS, has been remarkable to witness,” said Cat Lutz, Ph.D., director of the Rare and Orphan Disease Center at The Jackson Laboratory. “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.”
Treating rare diseases is very difficult, as the sample size is small and there are typically no therapeutics. Unfortunately, CdLS is no exception. The Brannigan family found hope when they contacted The Jackson Laboratory after receiving Hasti’s diagnosis. The JAX team created a rare disease mouse model that helps researchers better understand CdLS and its effects. This first step was a massive relief for Hasti’s family, but the path on the rare disease journey is often long and challenging. The next step for Hope for Hasti is to raise enough money to continue the research at JAX, testing out gene therapies developed on the genetic model to ensure its safety. This is Brannigan’s mission, and the reason he walks.
The difficult trek ahead
As a soldier, Brannigan is used to marching long distances with all his gear packed on his back, but this time he's doing it without one of the essentials: his boots. Brannigan also plans to complete the walk without a support crew or van, choosing instead to carry his food, water, medical supplies, clothes, and everything else on his back: 55 pounds total. Each night, Brannigan will sleep in the one-person tent he carries with him.
Brannigan says this symbolizes the rare disease journey.
"It can be lonely, and a happy ending is far from certain," Brannigan says. "Most of the time, there is little or no support, and I rely upon the kindness of strangers to help get me through. Having a rare disease makes a child vulnerable and exposed to the world in ways that can be painful and frightening. Hasti finds so many simple things difficult, so I thought I'd experience some of that difficulty for myself."
"The team at JAX has been incredible," Brannigan says. "As parents, we are not experts in medicine or science; we are just advocates for our daughter and her condition. However, JAX provides a huge wealth of experience and knowledge without which we could never hope to be successful in our journey to create a treatment for our little girl."
Lutz says, “The research team at JAX is honored to work with families like the Brannigans, and is hopeful that, one day, there will be more answers than questions when it comes to rare diseases like Hasti’s.”
To donate to this cause, and help Brannigan create a treatment for Hasti and others children with CdLS, please visit the Hope for Hasti GoFundMe campaign.
About The Jackson Laboratory
The Jackson Laboratory is an independent, nonprofit biomedical research institution with more than 2,400 employees. Headquartered in Bar Harbor, Maine, it has a National Cancer Institute-designated Cancer Center, a genomic medicine institute in Farmington, Conn., and facilities in Ellsworth and Augusta, Maine, in Sacramento, Calif., and Shanghai, China and a joint venture in Beijing.
Its mission is to discover precise genomic solutions for disease and empower the global biomedical community in the shared quest to improve human health.
Chris recently embarked on a barefoot US trek and along the way stopped at the Jackson Laboratory for Genomic Medicine for a brief reception. Hear comments from Chris and from JAX-GM's Scientific Director and Professor Charles Lee in the video below.
Yesterday, October 18, Chris Brannigan finished his 1,000 mile Hope for Hasti Barefoot March from Bar Harbor, Maine to Raleigh, North Carolina. At the finish line, he was welcomed by the Raleigh fire department, North Carolina Department of Military & Veterans Affairs, North Carolina government officials, JAX’s Mike McKernan and friends from Illumina. Virtually, over 500 people cheered him on during a Facebook Live video broadcasting his remarkable finish. We are so proud of Chris and what he was able to accomplish in raising awareness for the 30 million Americans living with a rare disease and the importance of research. You can continue to follow Hope for Hasti’s mission by visiting their website.
Chris Brannigan receives send-off at The Jackson Laboratory for Genomic Medicine during his barefoot march
Hear Chris Brannigan's story about his family's fight with rare disease and comments from JAX-GM's Director and Professor Charles Lee in this video from the Jackson Laboratory.