British siblings Jordan and Cian Adams have been making the most of their time, creating memories with their partners, given the challenging future they face. Both brothers have a rare gene mutation that almost certainly leads to frontotemporal dementia (FTD). Their mother, Geraldine, succumbed to the disease in 2016 at the age of 52.
The Adams brothers anticipate that symptoms may start in their mid-40s. To raise awareness about the condition, they undertook a challenging feat of running 33 marathons in 33 days. Their mission is to shed light on this brain disease and unite the dementia community.
Jordan, 31, shared with The Associated Press, “We have been able to turn adversity into something hopeful by advocating for others and trying to bring the dementia community together. Hopefully, that will show them they can lead positive lives too.” It all began with the London Marathon, where Jordan completed 26.2 miles with a refrigerator strapped to his back, symbolizing the weight carried by families dealing with FTD. Following this, the brothers started their “Irish Challenge,” running a marathon daily in each of the island’s 32 counties, honoring their mother’s Irish heritage. Twelve of her relatives also died due to the disease.
“The support in Ireland was incredible,” Jordan noted. Supporters joined them in running, they appeared on national TV, and they received an invitation from Ireland’s deputy prime minister to discuss better support for dementia patients.
Receiving a letter of congratulations from Prince William was a highlight for the brothers. The All England Club also invited them to watch the men’s semifinal matches from the Royal Box at Wimbledon.
Cruel Realities of FTD
The UK’s National Health Service describes FTD as an uncommon form of dementia with a “highly heritable” nature, often leading to changes in behavior, personality, language, and motor function. The Adams brothers carry the MAPT mutation, making the disease “fully penetrant,” with the average onset age being 49 years, corresponding with parental onset age.
Their mother died at home in Redditch six years after diagnosis. “It’s more of a certainty we’ll get it,” shared Jordan, referencing the 99.9% likelihood. Both brothers have confirmed the genetic issue through testing, while their elder sister, Kennedy, tested negative. As there is no cure for FTD, Jordan expressed skepticism about a cure arriving in time for them. He emphasized their focus on advancing key areas, including research and support services.
Working with Alzheimer’s groups in Britain and Ireland, they have raised nearly 2 million pounds ($2.7 million) to increase governmental support for services to ensure people with dementia and their families do not feel isolated.
Royal Box Experience
The brothers were part of a Royal Box gathering that included actors Benedict Cumberbatch and Hugh Laurie; they also met West Indies cricket legend Brian Lara and journalist Louis Theroux. “He asked about our connection to the event, and we shared our story with him. He was very interested,” said Jordan about Theroux.
The family cherished the All England Club’s invitation, viewed as a bucket-list experience their partners “can hold on to in future tough times when sadly we won’t remember them ourselves,” Jordan remarked. They collected keepsakes such as programs, name placards, and hats.
Looking ahead, their plans involve participating in the Chicago Marathon in October and organizing a trip to hike Mount Kilimanjaro through their non-profit, the FTD Brothers Foundation.