We are Jordan and Cian Adams, 2 of 3 siblings who grew up in the small town of Redditch, Worcestershire with our Mom ‘Geraldine’, Dad ‘Glenn’ and elder sister ‘Kennedy’.

Growing up we had a great childhood, and both of our parents provided us with a great start in life. Mom was particularly obsessed with big occasions; she was the life and soul of the party. Always making sure our day was extra special whether it be a birthday or Christmas as well as enjoying celebrations with close friends on a regular basis. She was a loving, generous and vivacious character who adored spending time with family and friends. She was very proud of her Irish background and would frequently put on the accent when socializing with friends or telling stories from her own childhood. She was the type of lady who you could not help but notice when she walked into a room, ready to talk to absolutely anybody and light up your day with her beautiful smile.

So, when you have such a big character like that as one of your parents, it doesn’t take long to notice subtle but significant changes in their character or behavior. and when we noticed mom becoming less and less outgoing , her mood lowering as well as numerous lapses in her memory we knew something wasn’t quite right and as time wore on moms ‘symptoms’ worsened. It was in this period when our dad chose to seek help medical help get to the root of what was causing these changes to our mom.

After months of back and forth with different GPs and consultants, an incorrect diagnoses of depression and different mental health issues including a silent stroke. Our mom was eventually told that she had ‘Early-Onset’ Frontotemporal Dementia (FTD) on the 23rd June 2010 and it was later that evening that our Dad had to break the news to us that Mom was terminally ill and that her health was going to deteriorate over a 6–10-year period. As that was an incredibly tough responsibility for my dad, we never blamed him for not telling us in the same conversation that it was hereditary and that we all had a 50% chance of inheriting the same FTD when we reached moms age.

At the time of mom's diagnosis Kennedy was 17, Jordan 15 and Cian was just 9 years of age and in the months and years that followed we all had to care for mom as her condition deteriorated, this included stopping mom from driving the car when she had her license revoked but could not remember or making sure she didn’t wonder out of the house on a walk and become confused as to where she was. Eventually leading to us helping to feed mom when she became permanently bed bound and helping to take her to the bathroom when she could no longer walk or talk. These are all duties of care which no child should have to do for a parent but when it is someone that you love, you have no choice. Sadly, on 14th March 2016 at the age of 52 my mom passed away peacefully at our family home.

It was only following my moms passing that Kennedy had lit up a burning desire to know whether she would inherit exactly what we had watched happen to our mom over the past 6 years. So, after reaching out to my Mom’s cousin Mary, Kennedy arranged a visit to Dublin Neurological Institute to see Professor Tim Lynch, the man who had researched and explored the familial FTD in our family through the case study of one of my mom's cousins, a 44-year-old Irish farmer as detailed in the article below in the Irish Times.

https://www.irishtimes.com/life-and-style/health-family/irish-research-is-unlocking-the-dark-secrets-of-dementia-1.2520727

Professor Lynch was able to explain in detail how and why FTD has affected our family through a genetic fault/mutation of the MAPT gene and during the visit Kennedy took part in various research studies before being referred for Genetic Testing back at the QE in Birmingham. Kennedy then followed a process of genetic counselling preparing for her eventual test result in the Spring of 2018 revealing she had inherited the normal copy of the gene from our Father and that she would not have to live with the same Dementia as our mom.

For the first time in years, we as a family had some positive news to celebrate and it enabled Kennedy to move on with her life and start a family of her own. Kennedy’s bravery in seeking clarity for her future gave Jordan the motivation to follow suit and go through the same genetic testing, receiving his result in September 2018 – the news that he was a carrier of the faulty copy, and he would have to live with the same FTD as mom. Jordan often describes his diagnosis as a ‘license to live’ and although his life is certain to be much shorter than most, he has been able to make life choices and decisions for his future to stop this familial Dementia being passed on any further. Sadly, for Jordan and his fiancée Agnès they earlier this year received sad news following Agnès falling pregnant that their child also carried the faulty gene and therefore, were unable to continue so their wait to start a family of their own goes on.

Jordan has used the power of knowing what lies ahead to take action in the form of raising awareness as a community speaker and fundraising for Alzheimer's Research UK through various running challenges including running a virtual marathon during lockdown, the official London Marathon twice, the second and most recent marathon was part of huge challenge of 7 marathons in 7 days where Jordan completed 26.2 miles every day for a week starting in our hometown of Redditch before navigating the grand union canal from Birmingham to London, finishing with the 2022 London Marathon.

So far, we have raised more than £30,000 over a 5-year period which we are incredibly proud of however, in February of 2023 Cian took the brave decision to get his genetic test result and sadly he too is a carrier of the faulty copy which he has inherited from out mom, meaning both brothers will have to live with FTD in their lifetime most likely becoming symptomatic in their early 40s and losing their lives within 10 years of diagnosis. This has led us to raise the bar in our efforts to raise awareness and funds for groundbreaking research which can ultimately lead to a cure for all types of Dementia and that’s why in 2024 were setting out on an epic challenge to run the entire length of the country.