Family of rugby hero raising money for vital research into rare disease

15 May 2023

Last December, at the age of just 66, Tony Johnson, ex-rugby league player and retired police sergeant died. Six years earlier, he had started his retirement from the police force, during which he hadn’t taken a single day off for sick, when he was diagnosed with hereditary cardiac amyloidosis.

Amyloidosis is a rare disease caused by a build-up of an abnormal protein called amyloid in organs and tissues throughout the body. There is no cure.

Following his diagnosis, Tony was offered the chance to take part in a research trial at the Royal Free Hospital, home of the National Amyloidosis Centre. The study looked at whether a particular medicine could slow down the build-up of the protein that accumulates in the heart in patients with cardiac amyloidosis.

Julian Gilmore, professor of medicine at the centre, said: “Cardiac amyloidosis is a progressive and fatal disease. The development of new treatments, currently available only via clinical trials, have substantially improved the quality of life and outcomes for patients who take part in them. We’re so grateful to all our patients, like Tony, who take part in trials and help us pave the way for a future in which these treatments are routinely available in the NHS.”

Tony’s wife Susan and children Mark, Matthew and Laura have launched a fundraising appeal in a bid to raise awareness of amyloidosis and to raise money in support of further research into the condition.

Laura said:

“He was really brave to go on the trial, not knowing whether it would help him. He became a police officer because he wanted to help people. So really this is a way for his legacy to be continuing to help people, through the fundraising and the awareness of the symptoms.

“It is important to help keep the research going. He had a hereditary form of amyloidosis which made us realise this could be any one of us.”

Tony was a veteran of the infamous 1981 Battle of Fartown between Huddersfield and Wigan, a bad-tempered game in which six players were sent off while Tony’s resilience and skill saw him hailed as man of the match.

Tony served the Rugby Football League as an investigator and mediator for more than a decade and following his retirement he played a leading role in the Huddersfield Former Players’ Association.

The Royal Free Charity is the only charity in the UK directly supporting the work and research of the National Amyloidosis Centre. The charity funds early-stage research, helping to ensure new diagnosis and treatment discoveries go from laboratory to clinic as quickly and safely as possible.

To find out more about the family’s fundraising appeal, visit their dedicated page at www.justgiving.com/fundraising/tony-tj-johnson.