In 2008 I lost my Dad, Alan Tong following a sudden but very short illness, later to be confirmed as a genetic form of Creutzfeldt-Jacob Disease, (CJD) one of four different forms of the disease.

Soon after Dads passing, my brother Matthew Tong, undertook genetic testing and learnt he too carried the gene for CJD. Sadly, on 8th July this year he was very unexpectedly diagnosed with active CJD leaving us as a family all in shock and disbelief, completely crushing us. Never did we imagine, this could happen again and so soon.

There is currently no cure or treatment for CJD but every day scientists and doctors are getting closer to finding a treatment. In fact, progress has already been made, but we still have a long way to go.

This is why I'm planning this challenge -

On 8th July 2026, marking the 2nd anniversary of Matthews diagnosis, I plan to complete the National Three Peaks Challenge, to then cycle to Leeds Footbal Club (Matthews team), and then cycle to Beccles Suffolk for a sky dive. All within one week. A lot can change in a week of someone living with CJD with it being such a quick degenerative illness. Hopefully during the week of this challenge, I can increase understanding, raise awareness and increase funds so that scientists and doctors can get closer to finding that crucial treatment. Challenges aren't supposed to be easy or fun, they're designed to push you to your limits, testing your stamina, endurance and mental strength. This challenge will certainly test mine and put me through my paces!

By donating, you'll be helping the 'Cure CJD' campaign to reach its vision of raising funds and supporting the work of the Medical Research Council (MRC) Prion Unit at University College London (UCL) to develop a treatment or cure for CJD, and to increase awareness and understanding of the disease. The cure may not be found during my lifetime, but with the help and support of others, perhaps there'll be a cure for mine and our childrens generation, that's my hope anyway!

Thank you for reading xx

UPDATE: On 9th November 2024 we very sadly and unexpectedly (despite living with CJD), lost my ‘big bro’ Matthew. He is so dearly missed and will forever be in our hearts.

Love you Matthew ♥️💔♥️

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Genetic, or more commonly referred to as Familial CJD is a very rare condition where one of the genes a person inherits from their parent (the prion protein gene) carries a mutation that causes prions to form in their brain during adulthood, triggering the symptoms of CJD and it can affect up to 1 in every 9 million people. CJD is currently responsible for 1 in 5,000 deaths in the UK each year. Sadly, the disease usually leads to death within one year of onset of illness, and often much sooner.

The vision of the campaign is to raise funds to support the work of the Medical Research Council (MRC) Prion Unit at University College London (UCL) to develop a treatment or cure for CJD, and to raise awareness and understanding of this disease.

MRC Prion Unit at UCL have developed an experimental antibody treatment called PRN100 designed to stop prion proteins from malfunctioning in the brain.

After an experimental treatment programme where PRN100 was given to a small number of patients in 2018/2019, more vital research is needed to advance PRN100 but will cost many millions to conduct a full clinical trial. With your help, we can help increase funds so that they can reach the target and find a cure for CJD.

Thank you for your support, I so greatly appreciate it xx