It has been 5 years since my genetic diagnosis of the MAPT mutation that causes the Frontotemporal Dementia that has devestated our family through the loss of my Nan, Auntie, Mom and many of their relatives in the form of cousins, aunties & uncles. 

Whilst trying to move forward as a family from the loss of our beloved mom and taking positive action for change in the way dementia is perceived following my own diagnosis in 2018, we recently had some more heartbreaking news as earlier this year my younger brother Cian was also diagnosed with the same MAPT mutation meaning we both face the same fate that dementia will one day strip us of who we are as individuals and create another huge loss in our friends & families lives. However, Cian like myself is more determined than ever to take action and be pro active in the fight for a cure. 

Only last month I attended my long overdue annual research visit to UCL hospitals Queens Square something that cian will also be involved with in the not so distant future. Unfortunately, this was my first visit since 2019 due to COVID and the delays/backlog that caused to the study programme and it is only now the GENFI team are getting all participants back in for their annual research days.

To give you a brief insight, GENFI is a research programme across Europe & Canada that collects data from lots of participants who have a family history of Fronto-Temporal Dementia in an effort to discover early signs of patients becoming onset with dementia as well finding new treatments via academic clinical trials led by the amazing Neuro team at UCL by working closely with drug companies in North America & Australia to lead towards a prevention of symptoms and hopefully one day a cure for FTD so people like me and cian can live a longer, healthier life.

We arrived in London this morning for an additional Medical Assessment, checking all my vitals followed by blood tests, urine samples & my first ever lumbar puncture. In addition to this I was then sent for an MRI scan, before completing a full psychological examination including various ‘brain games’ & cognitive tests before finally finishing the day off with an eye tracking exercise.

The main reason I want to share this is because most of us are under the impression that Dementia is a natural part of ageing but that is not the case at all. Having been away from the GENFI programme for 4 years it is amazing to see the progress they have made and the new studies they have introduced all in an effort to find a groundbreaking treatment for FTD. Within the next 2-5 years they will commence clinical drug trials on patients like me which is hugely encouraging. It is even more of a reason for me and others like me, particularly those who support @alzheimersresearchuk to keep raising awareness & funds for research. 

The world is ever changing and the past 12 months have been as emotionally & mentally challenging for my family as ever. Cian has been incredibly brave in taking the decision to have the test, we are all extremely proud of him and family & friends will continue to provide him with ongoing support. 

Furthermore, I feel empowered once more to take action and as my good friend Sue Strachan would say ‘keep banging the drum’ so next year Cian and I will not only be undertaking a thorough fitness/training plan gearing up to running the 2024 London Marathon for ARUK but in Autumn we will be taking on our biggest challenge yet when we attempt what we are calling ‘LE JOG’ backed by a team of family, close friends & fellow ARUK supporters in particular Nigel Watson, we will be Running from Lands End to John O’groats which is around 840 miles (32 Marathons) which we aim to complete in a month. 

Not only are we looking for generous support in the way of donations and sharing our story across social media platforms as we broadcast our training journey & LM2024. We are also looking for anybody willing to help sponsor us in the way of transport (camper vans for the month duration), nutrition & supplies that we will require to complete our LE JOG challenge.

Any help we can get in aid of this seismic effort #FORACURE and a cause so close to our hearts 🧡

Jordan & Cian x