He knows dementia will take him in his 40s, so he strapped a 55-lb fridge to his back and ran a marathon to make the invisible weight visible

Jordan Adams recently completed the London Marathon while carrying a 55-pound fridge strapped to his back, drawing stunned looks from spectators at every mile. As detailed by the Daily Dot, the stunt was far more than a physical challenge. It was a symbol meant to make an invisible struggle visible.

Adams, 30, and his younger brother Cian, 25, carry a rare genetic mutation that gives them a 99 percent chance of being diagnosed with frontotemporal dementia, or FTD. This progressive, early-onset disease devastates the brain, and for the brothers, it is not a matter of if it will happen, but when.

Their mother, Geraldine, was the heart of their family in Redditch, Worcestershire, where she lived with her husband Glenn and their three children, Kennedy, Jordan, and Cian. Her personality began to shift as she grew quieter and less outgoing, and her memory started to fail. After months of uncertainty and several incorrect diagnoses, she was finally diagnosed with FTD on June 23, 2010, at just 47 years old. She passed away peacefully at home on March 14, 2016, at the age of 52.

The weight of a disease that never lets go

The family’s connection to FTD runs deep through their Irish roots. Their grandmother was one of six siblings, four of whom developed the same condition, and across two generations, eight of thirteen cousins eventually died from it. Through medical research in Ireland, the family discovered their specific form of dementia is caused by a mutation in the MAPT gene, which each child of a carrier has a 50 percent chance of inheriting.

After their mother died, sister Kennedy tested negative for the mutation. Jordan received a positive result in 2018, a diagnosis he describes as a license to live. He and his partner Agnès learned earlier this year that their child had also inherited the gene, making it impossible for them to continue the pregnancy. In February 2023, Cian also tested positive. Both brothers now expect to become symptomatic in their early 40s and to lose their lives within a decade of that onset.

Choosing not to let this reality stop them, the brothers founded the FTD Brothers Foundation to raise awareness and fund research. Jordan’s London Marathon run, amid a broader push for race-day awareness, was a way to honor the people who supported him and Cian when they were struggling with depression and intrusive thoughts. “This marathon with a fridge on my back isn’t just a challenge,” Adams told the BBC. “It’s a symbol. Because that’s what it feels like sometimes, like you’re carrying something heavy that no one else can see.”

The brothers are currently in the middle of an even larger undertaking: running 33 marathons in 33 days, including one in every county in Ireland, to honor their mother and the 12 other relatives from her side of the family who died from FTD. Cian, a physiotherapist, is cycling the route across all 32 counties of Ireland alongside his brother. Their GoFundMe campaign has already surpassed £590,000 toward a target of £1 million for dementia research, and amid that effort, the story of a New Zealand parrot adapting to a physical disability drew comparisons online to the brothers’ own refusal to be defined by what they carry.

“I am a carrier. I have a 99.9% chance of getting familial FTD,” Adams told the BBC. “It’s not a matter of if. It’s a matter of when. And I just want to do as much as I can in the time that I have to help those living with dementia, those impacted by it, so that I leave this world, hopefully in a better place when dementia does take my life.” After finishing the London Marathon, Adams said he felt as though the entire city was with him, an experience he does not expect to have again.