British Brothers Against Dementia: Marathon Mission Raises Awareness

British siblings Jordan and Cian Adams have been creating lasting memories with their partners amidst a significant challenge. They carry a rare gene mutation linked to frontotemporal dementia (FTD), a condition that impacted their mother, Geraldine, who passed away in 2016 at 52. Jordan and Cian anticipate symptoms starting in their mid-40s.

To raise awareness about FTD, the brothers undertook a remarkable feat. They completed 33 marathons over 33 days. Their journey started with the London Marathon, where Jordan carried a refrigerator on his back to symbolize the burden felt by families affected by FTD. The following day, they embarked on the ‘Irish Challenge,’ running a marathon daily across Ireland’s 32 counties. This effort holds personal significance, as their mother had Irish roots, and many relatives from that side succumbed to the disease.

Their advocacy work drew substantial support in Ireland. Numerous supporters joined in their runs, and they made appearances on national television. Ireland’s deputy prime minister invited them to discuss how the country could better support those with dementia. On the British side, Prince William praised their ‘inspiring journey.’ The All England Club also extended an invitation for them to attend the Royal Box during the men’s semifinal matches at Wimbledon.

Cruel Realities of FTD

FTD is an uncommon dementia subtype, often hereditary, affecting behavior, personality, language, and motor function. The brothers have the MAPT mutation, which the UK’s National Health Service describes as having almost certain onset by age 49, correlating with parental onset age. With a 99.9% likelihood of developing FTD, Jordan shared, “It’s more of a guarantee that we’re going to get it, rather than an if.”

Currently, there is no cure for FTD. While Jordan hopes for advancements, he remains pragmatic about his and his brother’s future. Their focus is on fundraising and advocacy to improve welfare support for afflicted families through Alzheimer’s organizations in Britain and Ireland. They’ve raised nearly 2 million pounds ($2.7 million) and strive for increased government support to ensure families receiving support feel less isolated.

Their future plans include participating in the Chicago Marathon in October. They also aim to lead a group on a Mount Kilimanjaro hike through their non-profit, the FTD Brothers Foundation.

Royal Box Experience

At Wimbledon, the brothers shared the Royal Box with personalities including actors Benedict Cumberbatch and Hugh Laurie, and West Indies cricket legend Brian Lara. Jordan recounts a conversation with journalist Louis Theroux, who showed genuine interest in their cause.

The brothers expressed gratitude for the experience at the All England Club, a milestone for their partners to cherish even if they may forget these moments in the future. Jordan reflected on collecting mementos from the day, which can serve as memories of their achievements and resilience. These artifacts, including programs, placards, and hats, will hopefully become part of stories shared with future generations.