Jordan Adams.Instagram

The 30-year-old and his brother, Cian, have raised over €500,000 for their cause, after being diagnosed with ‘early-onset’ frontotemporal dementia (FTD).

Both brothers carry a gene that was passed down by their mother, Geraldine, who passed away in 2016.

This means that Jordan and Cian, who are from Redditch in England, are 99% likely to contract the condition.

Over the weekend, Jordan ran the London Marathon with a 25kg fridge on his back.

Jordan Adams ran the London Marathon with a fridge on his back this weekend.

Now, he is undertaking a new challenge in memory of 12 Irish relatives who all died from FTD.

The brothers have been raising money for years, with the latest challenge supporting the Alzheimer Society of Ireland and the work of their non-profit, the FTD Brothers Foundation.

They explained: "We had a happy childhood. Our parents gave us a strong start in life, and our mum was the heart of everything. She lived for big occasions – birthdays, Christmas, family gatherings – and made every moment feel special. She was loving, generous, full of life, and incredibly social.

"Mum was also deeply proud of her Irish roots. Her own parents were from the county borderlands between Longford and Leitrim, and she would often slip into an Irish accent when telling stories or chatting with friends.

"She was the kind of person you couldn’t help but notice when she walked into a room – always smiling, always talking, always lifting others.

"So when her personality began to change, it was impossible not to notice."

Geraldine was diagnosed with FTD on June 23, 2010, meaning that she was terminally ill and her condition would deteriorate over the next six to ten years.

The brothers wrote: "In the years that followed, we became carers for our mum as her condition progressed. That meant taking away her car keys when she could no longer safely drive but couldn’t remember why.

"Making sure she didn’t wander out of the house and become lost. Later, it meant helping to feed her, move her, and support her with the most basic daily tasks when she could no longer walk or speak.

"These are things no child should have to do for a parent – but when it’s someone you love, you do what you have to do."

After Geraldine passed away at the age of 52, Jordan and Cian’s older sister, Kennedy, decided to take a test to see if she carried the gene.

Kennedy received the good news that she had inherited the normal copy of the gene from their father, though Jordan was not so lucky.

The GoFundMe page states: "Jordan describes that diagnosis as a 'license to live'. Knowing what lies ahead has sharpened every decision since – including the decision to ensure this disease is 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 continues."

In 2023, Cian was told that he also carried his mother’s gene, meaning both brothers will likely become symptomatic in their 40s and lose their lives within a decade of diagnosis.

* This article was originally published on Extra.ie.