LONDON (AP) — British brothers Jordan and Cian Adams made sure to bring back little mementos from their day sitting among the VIPs at Wimbledon.
A program. The Royal Box seating chart with their names on it. A hat.
They’re creating and cherishing memories now with their partners because of what’s ahead. The brothers have a rare gene mutation that is all but certain to lead to frontotemporal dementia (FTD). Their mother, Geraldine, died from the disease
in 2016 at age 52.
The brothers, who expect symptoms to begin in their mid-40s, ran 33 marathons in 33 days on their mission to raise awareness of the brain disease.
"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 in an interview.
It started at the London Marathon, where Jordan ran all 26.2 miles with a refrigerator strapped to his back — symbolic of the weight family members bear for loved ones with FTD.
The next day, they began their “Irish Challenge,” a marathon per day in each of the island’s 32 counties. Their mother’s family has Irish roots and 12 relatives on that side have died of the disease, they said.
The outpouring in Ireland for the “FTD Brothers” was overwhelming, with supporters joining in to run and root them on, appearances on national TV, and an invitation from Ireland’s deputy prime minister to speak to government officials about how they can better support people with dementia.
From the British side, Prince William wrote to congratulate them on their “inspiring journey.” The All England Club then followed with an invitation to the Royal Box, where the brothers and their respective partners watched the men’s semifinal matches on Friday.
They planned to be special guests of the Gaelic Athletic Association on Sunday for the national Gaelic football semifinals at Croke Park in Dublin.
The U.K.'s National Health Service describes FTD as an uncommon dementia subtype that is “highly heritable” and characterized by “changes in behavior, personality, language and motor function.” With a MAPT mutation — which the brothers carry — the disease is "fully penetrant," the NHS says, with the mean age of onset at 49 years “with a strong correlation with parental age of onset.”
The brothers' mother died at home in Redditch, just south of Birmingham, about six years after being diagnosed.
“It’s more of a guarantee that we’re going to get it," said Jordan, citing a 99.9% likelihood. “Rather than an if, it’s a matter of when.”
Both Jordan and Cian, 25, have undergone testing that confirmed the genetic problem. Their older sister, Kennedy, tested negative.
There is no cure for FTD.
“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,” Jordan 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."
Working with Alzheimer's groups in Britain and Ireland, they've raised nearly 2 million pounds ($2.7 million) and remain focused on getting more government support for services so that “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," Jordan said.
Upcoming plans include running the Chicago Marathon in October and taking a group of people to hike Mount Kilimanjaro through their non-profit FTD Brothers Foundation.
The brothers were part of a Royal Box contingent that included actors Benedict Cumberbatch and Hugh Laurie. They chatted with West Indies cricket great Brian Lara and journalist/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 his family was “very grateful” for the All England Club's invitation in a bucket-list experience that 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 added.
“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.”
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AP tennis: https://apnews.com/hub/tennis
