LONDON (AP) — British brothers Jordan and Cian Adams walked away from their day at Wimbledon with more than just memories — they brought home a program, their personalized seating chart from the Royal Box, and a hat each, small tokens they plan to treasure for years to come.
The reason those keepsakes matter so much is heartbreaking. Both brothers carry a rare genetic mutation that makes it nearly certain they will develop frontotemporal dementia, known as FTD. Their mother, Geraldine, lost her life to the same disease in 2016 at just 52 years old, passing away at the family home in Redditch, just south of Birmingham, roughly six years after her diagnosis.
The brothers expect their own symptoms to begin in their mid-40s — a reality they live with every day. In response, they set out to do something extraordinary: run 33 marathons over 33 consecutive days to shine a light on FTD and bring the dementia community together.
“We have been able to turn adversity into something quite hopeful by advocating for other people and trying to bring the dementia community together and hopefully that will be evidence to them that they can live positive lives too,” Jordan, 31, told the Associated Press.
The campaign kicked off at the London Marathon, where Jordan tackled all 26.2 miles with a refrigerator strapped to his back — a deliberate symbol of the heavy burden that family caregivers carry when a loved one has FTD.
The following day, the brothers launched what they called the “Irish Challenge,” completing one marathon per day in each of the island of Ireland’s 32 counties. The connection was personal — their mother’s family has Irish roots, and 12 relatives on that side of the family have died from the disease.
The response across Ireland was extraordinary. Crowds of supporters turned out to run alongside them and cheer them on, they made appearances on national television, and Ireland’s deputy prime minister extended an invitation for them to address government officials about improving support for people living with dementia.
Recognition also came from Britain. Prince William sent a personal letter commending their “inspiring journey,” and the All England Club followed up with an invitation to the Royal Box, where Jordan, Cian, and their partners watched the men’s semifinal matches on Friday. The brothers were also set to be honored guests of the Gaelic Athletic Association on Sunday at the national Gaelic football semifinals at Croke Park in Dublin.
The UK’s National Health Service describes FTD as an uncommon form of dementia that is “highly heritable” and marked by “changes in behavior, personality, language and motor function.” The specific mutation the brothers carry — known as a MAPT mutation — makes the disease “fully penetrant,” according to the NHS, meaning it is essentially guaranteed to develop, with an average age of onset around 49 that closely tracks with the age a parent first showed symptoms.
Both Jordan and Cian, 25, have undergone genetic testing that confirmed they carry the mutation. Their older sister, Kennedy, was tested and came back negative. There is currently no cure for FTD.
“It’s more of a guarantee that we’re going to get it,” Jordan said, noting a 99.9% likelihood. “Rather than an if, it’s a matter of when.”
Jordan was candid about his outlook on a cure arriving in time to help him and his brother. “If I’m totally honest, and I’m quite brazen about this, I don’t believe that a cure will come in time for me and my brother,” he said. “I’ve got the best part of 10 to 15 years before symptoms likely arise. … We just want to move things forward in all different areas including vital research but welfare support and services is just as important and something that we get echoed a lot to us by the families and the people who we’re advocating for.”
Through their work alongside Alzheimer’s organizations in Britain and Ireland, the brothers have raised nearly 2 million pounds — approximately $2.7 million — and continue pushing for greater government investment in services so that, as Jordan put it, “people living with dementia and their families don’t feel alone, don’t feel isolated and that’s just as important as finding the treatment and the cure.”
Looking ahead, the brothers plan to run the Chicago Marathon in October and lead a group climb of Mount Kilimanjaro through their nonprofit, the FTD Brothers Foundation.
Inside the Royal Box, the brothers found themselves among notable company, including actors Benedict Cumberbatch and Hugh Laurie. They also had a chance to speak with West Indies cricket legend Brian Lara and journalist and podcaster Louis Theroux.
“I’ve watched his stuff over the years,” Jordan said of Theroux. “He asked what our connection was to the event. We opened up to him about that. He found that very interesting. Very humble man.”
Jordan said the family was “very grateful” for the All England Club’s invitation, describing the day as a bucket-list experience — one their partners “can hold on to in those difficult times in the future when sadly we won’t remember them ourselves.”
“It seems silly, but we’ve collected artifacts and come away with a program and our little name placards and the seating plan for the day in the Royal Box and took away a hat each and things like that,” Jordan said. “It’s things like that hopefully if we have families of our own, and we have children of our own, our partners will be able to show them that along with photographs of the day and show them what we were able to do in the face of adversity.”
