British Brothers Raise FTD Awareness with Marathon Feat

Jordan and Cian Adams, two brothers from the UK, are cherishing memorable experiences as they face a challenging future. They enjoyed a day at Wimbledon among VIPs, collecting souvenirs like programs and a seating chart with their names to remember the occasion. They do this because they carry a rare gene mutation that will likely lead to frontotemporal dementia (FTD), a condition that claimed their mother, Geraldine, at age 52 in 2016.

The brothers expect symptoms in their mid-40s. In a bid to raise awareness, they completed an impressive feat; running 33 marathons in 33 days. Their journey began at the London Marathon, where Jordan ran while carrying a refrigerator on his back, symbolizing the burden families endure with FTD. Following this, they started the “Irish Challenge,” running a marathon daily across Ireland’s 32 counties, paying homage to their Irish roots.

“We have been able to turn adversity into hope by advocating for others and uniting the dementia community,” Jordan, 31, explained to The Associated Press.

Their efforts resonated widely. In Ireland, they received overwhelming support with public engagements and media appearances on national TV. Ireland’s deputy prime minister invited them for a discussion on improving dementia care. Prince William acknowledged their journey in a letter, and the All England Club invited them to the Royal Box to watch the Wimbledon men’s semifinal matches.

Cruel Realities of FTD

The UK’s National Health Service (NHS) characterizes FTD as an uncommon, inheritable dementia subtype impacting behavior, personality, language, and motor skills. The gene mutation, MAPT, that Jordan and Cian possess is known as “fully penetrant,” with symptoms often appearing around age 49.

Jordan noted the near certainty of developing the disease, with a 99.9% chance. Testing confirmed their genetic fate, while their sister, Kennedy, tested negative. Jordan expressed skepticism about potential cures arriving in time to help them. He emphasized the necessity for both research and welfare services.

Working alongside Alzheimer’s organizations in Britain and Ireland, they’ve raised close to £2 million ($2.7 million). They aim to increase government backing to ensure people with dementia and their families receive adequate support, thus preventing isolation.

The FTD Brothers Foundation they established plans to participate in the Chicago Marathon and lead a group to Mount Kilimanjaro.

Royal Box Experience

While at Wimbledon, the brothers mingled with celebrities such as actors Benedict Cumberbatch, Hugh Laurie, and West Indies cricket legend Brian Lara. They shared their story with journalist Louis Theroux, who expressed genuine interest. The invitation to the Royal Box was a treasured experience that their partners will cherish and share with future generations.

Jordan anticipated that memories of such moments, along with keepsakes like the seating plan and a hat, will help their families remember the brothers’ endeavors during adversity.