British Army Major walking to boost rare disease research for his daughter
A British Army major passed through Delaware last week on a 1,200-mile barefoot walk to raise money for research on a rare disease.
Chris Brannigan is calling his solo journey along the East Coast “Hope for Hasti” after his daughter.
“Hasti (Chris’ daughter) is 9-years-old. She has a rare genetic condition called Cornelia de Lange Syndrome or CdLS for short," said Brannigan. "It’s a condition that she had totally randomly - it’s not inherited. It’s just a single gene mutation shortly after she was conceived that affects her growth, it gives her seizures and it affects her cognition and her ability to learn and so many other things besides.
Hasti was diagnosed in 2019 and Brannigan notes doctors say things could get worse for her after the age of 12.
To raise money for research toward developing a cure, Brannigan started his grueling barefoot walk August 31 in Bar Harbor, Maine. He hopes to end it October 24 at Camp Lejeune in North Carolina.
There is a research project underway at The Jackson Laboratory - Rare and Orphan Disease Center to test gene therapies that could help Hasti and other children.
If you would like to donate to help Hasti and the Brannigan's, click here.