Colchester woman takes on charity challenges over genetic CJD

Melanie Hey, 47, is looking to complete three massive tasks all in aid of Cure CJD, which is a University College London led charity.

Melanie lost her dad Alan Tong aged 63 in May 2008 after he fell ill in the February of that year.

Family - Melanie Hey will be doing her fundraiser for her dad Alan Tong (left) and brother Matthew Tong (Image: Melanie Hey) Creutzfeldt-Jakob disease (CJD) is a rare and fatal condition that affects the brain, causing brain damage that worsens rapidly over time.

Melanie’s brother Matthew Tong, 51, then fell ill in July 2024 after he was diagnosed with the same genetic disease.

Prepared - Melanie Hey is excited ahead of her fundraising efforts (Image: Melanie Hey) To raise money for the charity, in July 2025 she plans to complete the National Three Peaks Challenge which ends in Chester, then cycle to Leeds Football Club and then to cycle to Beccles for a skydive, all to be achieved in one week.

Melanie spoke of what it means to take on this daunting task. 

She said: “My dad was a very clever man and was gifted at learning new skills.

“He was a self-taught concertina player and often played alongside his Morris Team musician friends if he wasn't dancing. An amateur photographer and a keen walker.

“He was a devoted father and husband and is dearly missed. 

“My brother Matthew fell ill in July 2024 after having been genetically tested for CJD soon after my dad’s passing.

"His diagnosis in July was very unexpected and has devasted our family and he will leave behind a wife and daughter."

Melanie said the family was still coming to terms with the shocking news. 

She added: “Like my Dad, Matthew has lived life to the full with a great sense of humour which despite his illness he still tries to remain full of good spirit, banter and laughter, and making the most of every single day.

“As a family we are heartbroken and devastated to be witnessing Matthew struggle and battle through this horrific disease of which there is no cure.

“This is why I feel I need to be the voice for my dad and my brother to help raise awareness of CJD and help raise funding so that a cure can be found.”

The work of the Medical Research Council Prion Unit at University College London aims to develop a treatment or cure for CJD, and to raise awareness and understanding of this disease.

To donate to Melanie's page, visit https://tinyurl.com/Melanie-CJD-page

To learn more about CJD, visit https://www.nhs.uk/conditions/creutzfeldt-jakob-disease-cjd/