Jordan Adams carries the gene that will likely see him become ill in his mid-40s, facing the same devastating disease that killed his mum, and on May 28 he hopes to finish a huge challenge in Dublin
Jordan Adams and his beloved mum Geraldine (Image: Jordan Adams)
Jordan Adams will probably become severely unwell in his mid-40s before passing away in the same tragic manner he watched his own mother’s life end.
While the statement above is harsh and devastating, Jordan doesn’t avoid confronting it. Dementia has torn through his family – claiming his mum and 12 relatives altogether.
The 30-year-old is currently preparing to complete 32 marathons throughout 32 counties in Ireland with the aim of raising €1million for early-onset frontotemporal dementia (FTD) research.
The decision to select Ireland for this challenge holds special significance, as Jordan revealed during a moving interview with the Irish Mirror.
Jordan and his brother, Cian, come from Redditch, Worcestershire, and in 2016, their cherished mum, Geraldine, passed away from FTD. She was only 52.
Their mother sadly became a shell of her old self (Image: Jordan Adams)
The brothers underwent testing afterwards, and they heartbreakingly discovered that they both carry the defective MAPT gene responsible for the premature deaths of their mum and aunt. They faced a 50-50 probability of inheriting it, whilst their sister, Kennedy, thankfully tested negative.
This indicates Jordan and Cian will experience shorter lifespans than most people and their symptoms will prove more complicated than simply memory loss. However, their work in challenging the stigma around dementia has been absolutely remarkable.
Regarding what prompted this, Jordan shared with us: “Ask anyone who has lost a parent, it’s incredibly difficult, but to care for my mum from the age of 15 for six years…
Jordan and his brother Cian are doing their mother proud (Image: Jordan Adams)
“To watch her become less and less of the amazing person that she was, and have to do things for her which no child should have to do for a parent, it was extremely difficult.
“But having watched that whole journey, and it is something I will have to face myself, it has completely changed my perspective on life.
“I could sit and let this circumstance consume me but it’s not going to change anything. I tend to focus on things I can have an impact on and one of those things is creating positive change in the world of dementia and creating a space and a community that didn’t exist for 15-year-old me.”
With this in mind, Jordan explained that completing 32 consecutive marathons across Ireland, straight after tackling the London Marathon on April 26 with a fridge strapped to his back, represents the most significant undertaking he has ever embarked upon.
His grandparents, originally from Leitrim and Longford, relocated to Birmingham where they eventually met and had two children. Those children were Jordan’s mum and aunt, both of whom have since died from dementia.
Jordan’s mum and her sister, Anne, who both died from dementia (Image: Jordan Adams)
Geraldine was “incredibly proud” of her Irish heritage, and Jordan is committed to honouring that through his marathon challenge.
He explained: “Ultimately, the reason why I am going to live a shorter life than most, probably getting ill in my mid 40s, is because of my Irish blood, my Irish DNA, that is why we feel so connected to Ireland.
“For a long time, my mum’s family in Ireland have not wanted to talk about it, it’s scary and it has caused a lot of pain and heartbreak in our family and dementia is probably one of the biggest taboo subjects out there.
“The reason we are coming to Ireland is because we want to have a direct impact, positive impact, on support, education, awareness, as well as funding research in Ireland as well, if we can. That’s why we picked the Alzheimer’s Society of Ireland to fundraise for, alongside our foundation (FTD Brothers Foundation).”
He has already raised hundreds of thousands(Image: Alzheimer’s Research)
Since their appearance on the Tommy Tiernan show, the brothers have been “blown away” by the support from the Irish public, which has deepened their connection to the Emerald Isle.
Following the announcement of their challenge, Irish individuals have generously offered their homes and pledged various forms of assistance to enable them to complete it.
The brothers, who have previously raised hundreds of thousands, have undertaken numerous endurance challenges — including running the entire length of the UK in 2024.
However, Jordan acknowledged that there will be moments during the Irish challenge when it will seem “almost impossible”. Despite this, he remains committed to uniting communities and encouraging people, particularly those affected by dementia in Ireland, to join them in their run.
The brothers are no strangers to endurance challenges(Image: Jordan Adams)
Given he’s shouldering such an immense commitment through his challenge, pledging to meet individuals in each county following his runs who carry their own experiences with dementia, we enquired whether Jordan experienced days when everything became overwhelming. His response was strikingly candid.
He disclosed he’d recently stepped away from social media for a fortnight, where he maintains an Instagram account with 344,000 followers, explaining how he hasn’t stopped campaigning there for two years, even whilst on holiday.
The young man, who is married to wife Agnes, continued: “When you speak about a subject that means so much to you, and has devastated your family and is such an emotive topic, there are definitely days where I feel really down and I struggle with it and I do feel the weight of my circumstances and it is really difficult to manage.
Siblings Cian, Kennedy and Jordan (Image: Jordan Adams)
“And I don’t have all the answers and I do have days where I feel misunderstood myself. We have now built this platform on social media so I feel a responsibility, but at times people put me on a pedestal in the community as someone inspiring, but they also probably forget that I am still human and I still have emotions and sometimes I just want to be normal Jordan.”
He mentioned he attempts to convey this online to remain as genuine as possible, and described how he rarely documents his training sessions, noting that represents his precious time to lace up his trainers, be outdoors in nature, and discover calm and mental clarity during challenging periods.
Wrapping up his thoughts, he explained: “I speak quite openly about my ongoing struggles with depression which I’ve had. I don’t see it that I am ever going to be cured from that. But I just continue to try and find coping mechanisms and try and live the best possible life I can with such rare and quite difficult circumstances.”
Regarding how Irish people can contribute, he simply urged them to follow their FTD Brothers pages to amplify the message.
Jordan is living an extraordinary live (Image: Jordan Adams)
He explained this would enable them to create a legacy that will affect thousands, potentially millions, of individuals touched by dementia, long after they’ve passed.
Before embarking on his Irish marathon challenge, he told supporters they needn’t discuss anything painful, but to allow them to be the voice, and how a contribution, or even a straightforward share of their GoFundMe page, would be enormously significant in helping them reach their goals.
He mentioned he was especially looking forward to experiencing Ireland’s breathtaking landscape during his runs and that visiting family in Longford, where his mother’s cousins remain, will be an emotional experience.
He also remarked: “And touch wood, if I get through with no injuries, finishing in Dublin could be really really special surrounded by family and friends. Hopefully we can celebrate a special achievement with lots of people who have supported us and care about us.”
In his concluding remarks, Jordan shared with us: “I genuinely believe that we all get dealt certain cards in life, and I have pretty brutal ones dealt to me, but you have a choice with how you play your hand, and the hand I am playing, in my eyes, is the most positive one that I possibly could do.
“I am trying to use my diagnosis and my circumstance as a licence to live and show people that life may be short but that doesn’t mean that my life can’t be extraordinary by the same measure and that’s what I am trying to do.
“I am trying to do something that outlast myself and my brother and leave a real legacy behind for me and my family but hopefully across the Irish Sea but also on a global scale which is what we are hoping to do.”
To help Jordan and his brother achieve this, you can make a donation on their GoFundMe page here