Denmark’s Lesley Murphy awarded Order of Australia Medal for advocating for people living with rare diseases

Denmark’s Lesley Murphy has been awarded an Order of Australia Medal for her 20 years of volunteer work advocating for people living with rare diseases.

Ms Murphy received the OAM in last month’s Australia Day Honours list.

She was recognised for her service to community health in paving the way for vital support and information services for Australians living with rare diseases.

Ms Murphy’s advocacy started after her late son Conor was diagnosed with Duchenne muscular dystrophy at the age of three.

Duchenne muscular dystrophy occurs in about one in 3500 male births and is extremely rare in women.

There are more than 7000 rare diseases and they affect fewer than five in every 10,000 people, according to the National Strategic Action Plan for Rare Diseases.

“I guess this whole journey really started when my youngest son Conor was diagnosed at the age of three with Duchenne muscular dystrophy,” she said.

“It’s a genetic disease which causes muscle wasting in boys and it’s usually terminal. He passed away at the age of 25.

“But that diagnosis launched me on a long path of advocacy for him and as he got older and his needs increased, it became increasingly obvious that a lot of the support that he needed just wasn’t available.”

Ms Murphy joined Muscular Dystrophy WA’s board in 2007 where she volunteered four days a week, creating the organisation’s first community support programs.

She was instrumental in the widespread adoption of CoughAssist machines in the homes of people living with MD across the country.

After working with MDWA for several years, Ms Murphy became interested in advocating for people with all sorts of rare diseases.

“After finishing with MDWA I became more involved with people’s rare diseases in general, not just muscular dystrophy specifically,” she said.

“In 2011, with the help of WA Health Department, we organised the first rare disease symposium in Australia.

“As a result of that myself and a few other people got together and formed the first national rare disease organisation called Rare Voices Australia where I was the inaugural secretary.”

RVA is now the peak body for Australians living with a rare disease and played a pivotal role in the creation of the National Strategic Action Plan for Rare Diseases, launched in 2020.

Ms Murphy has also served as a member of national health and medical research advisory committees.

All while volunteering, she was working part-time as a teacher and helping to care for her son.

After retirement, she moved to Denmark where she is continuing her community service by volunteering with St John Ambulance.

“Being a St John Ambulance volunteer has been a fantastic thing to do and it’s very intellectually stimulating,” Ms Murphy said.

“I’ve met some absolutely brilliant people and have made some really great friends.

“Obviously you are helping and supporting the community but on a personal level, it’s the personal connection that you make with people that you meet that really makes it worthwhile.”

Ms Murphy said she accepted the award of behalf of all Australians living with a rare disease.

“For me it’s about acknowledging the thousands of Australians who live with rare diseases who get no recognition and get very little support,” she said.

“There are people in Australia who might be the only ones with that disease.

“Up until Rare Voices was established they had nowhere to go, they had no one to contact to give them support or advice or put them in touch with support groups.”