British brothers with dementia gene brave 33 marathons in 33 days raising £1.8million

Two British brothers with a rare dementia gene have braved 33 marathons in 33 days, raising £1.5million for research on the condition.

Jordan, 30, and Cian Adams, 25, are nicknamed the FTD Brothers after being diagnosed with a rare gene which causes early-onset frontotemporal dementia (FTD) – a condition which took their mother, Geraldine, at the age of 52.

The British brothers set out an ambitious challenge of running 33 marathons in 33 days – first starting in London and then running 26.2 miles each day in each of the 32 counties of Ireland.

Today, they have completed the challenge, having raised £1.8million to support the Alzheimer Society of Ireland and their own organisation, FTD Brothers Foundation.

The pair, alongside their sister, Kennedy, who does not carry the FTD gene, thanked the crowds who joined them on their final leg, which went through the city of Dublin.

Jordan said from a podium: "Thank you to all of you for showing your colours, your real Irish spirit, showing the power of when people come together.

"We hope over the last 33 days we brought hope to people, not only those who have dementia but hope to an entire nation because we felt the support."

The brothers were emotional crossing the finish line, embracing family and friends, with their dad, Glenn, hugging the pair with tears falling from their faces.

Paying homage to their roots, the brothers did the majority of the challenge in Ireland, where their mother's side of the family was from.

Their mother, Geraldine, who carried the rare genetic gene, was Irish, with her parents coming from Longford and Leitrim, in the centre of the country.

The condition, which typically impacts people younger than Alzheimer's does, impacted four of their Irish grandmother's siblings.

Of those four impacted siblings, 13 children were born, eight of whom have gone on to develop FTD and tragically pass away.

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In September 2018, Jordan undertook testing to see if he was a carrier of the faulty MAPT gene, which returned positive, meaning he will develop the same form of dementia as his mother.

Despite the news, Jordan described the diagnosis as a "licence to live," saying that knowing what lies ahead has sharpened every decision he has made since.

One of those decisions was to ensure the disease was not passed on further.

Tragically, earlier this year, Jordan and his partner Agnès learned during a pregnancy that their child had also inherited the faulty gene and they were unable to continue.

Their journey to start a family goes on.

In February 2023, Cian also chose to be tested and received the same result as his older brother.

Both brothers, therefore, will develop Frontotemporal Dementia, likely becoming symptomatic in their early 40s and losing their lives within a decade of diagnosis.

Several of their cousins have also undergone genetic testing, something previous generations were never able to do, with each decision described as deeply personal but part of a collective determination to end decades of silent heartbreak in the family.

Jordan said today from the Irish capital after completing the race the diagnosis can either "consume you" or "use it as a powerful message".

He said: "I will lose my life starting more than likely in my mid to late 40s.

"That hand you get dealt can consume you or you can walk through a door where you can use it as a powerful message to the world to show that no matter the time you have here or the cards that have been dealt, you have a choice how you play your hand.”

Glenn described seeing your parent die from dementia is "cruel", leaving a "lasting scar".

He said: "Living as children, and seeing one of your parents die from dementia, is cruel. It leaves a lasting scar."

"They’re not anything really other than normal working-class boys from a small town in the Midlands.

"We are normal people but Jordan is capable of extraordinary things, and I’m really proud of what he’s doing."

Glenn said the brothers are already planning their next challenge.

Jordan, who got married two years ago, will finally go on his honeymoon with Agnès.

After the break, the siblings will run the Sarajevo Half Marathon and then, will climb Mount Kilamanjaro, Tanzania in October.

Their GoFundMe page can be found here.