Emily Chapman Laing
Mentor, advocate, consultant, author and Clyde North local Julie Cini said she was “pretty stoked” to find out she was a recipient of the Medal of the Order of Australia as part of the King’s Birthday Honours.
“This is like my cherry on top of everything I’ve done and I’m really excited to be acknowledged in this way,” she said.
“As a person who’s a nobody, who’s a general everyday Joe-blow person, to be acknowledged with an OAM is testament to everything I have achieved over the years and it’s a real honour.”
Julie was awarded the OAM for her service to community health through her work with Spinal Muscular Atrophy (SMA) Australia, where she has been a Co-Founder, President and Chief Executive Officer.
Julie’s journey began with the devastating passing of her two daughters Montanna and Zarlee, who both suffered Type 1 SMA.
Montanna was ten months of age when she passed away in 2004.
In May the following year, Julie lost her husband Ross in an accident, when she was 13 weeks pregnant with Zarlee.
Julie gave birth to Zarlee, who sadly passed away 12 months later on Christmas Day.
Where others may have succumbed to grief and loss, Julie made it her mission to advocate for the disease that took her daughters.
One in 30 people carry the gene for SMA, an inherited disease which results in the loss of nerves in the spinal cord.
The muscles connecting to those nerves, particularly in the neck, trunk, arms and legs, weaken, causing respiratory problems that prevent most children with Type 1 SMA from reaching their second birthday.
Julie has made significant advancements in the treatments available to families with SMA-affected children.
In 2017, Julie fought for a government subsidy for a life-saving SMA treatment called Spinraza.
At the time, it was the only known treatment for the disease and cost families an enormous $367,000 per year.
In 2018, she won the fight and Spinraza was listed on the Pharmaceutical Benefits Scheme (PBS), making the treatment $39.50 for non-concession families, while concession holders paid just $6.40.
Since then, Julie has gotten another three treatments across the line.
“No matter what stage of SMA you’re at, you’ll be treated and it’s a game changer in the SMA world,” she said.
“It’s gone from an incurable disease five years ago to one where you will get to see your child grow up, it’s phenomenal.”
One of these treatments is a gene therapy called Zolgensma, an injection given to SMA-affected children at birth.
The treatment was PBS listed in 2022 and works by “putting a band-aid over the missing gene, helping it to be read correctly”.
“I’ve seen kids that are Type 1 and they’re walking, that was not an option five years ago but today that’s an option,” Julie said.
Zolgensma was the highest cost gene therapy in Australia, at $2.2 million.
Today, thanks to Julie, it costs between $5-$40 through a general chemist, and is free through hospital pharmacies.
Another of Julie’s highlights has been her work in getting newborn screening for SMA.
“The inception of newborn screening has been one of my big moments, to know that every child in Australia moving forward will be tested for this is an absolute delight,” she said.
“For someone in five years time who has no idea who I am, I’ve given the gift of life to them and there’s not many people in the world who can say that.
“They’re just going to know they have access to treatment and that is the legacy I get to leave.”
All of Julie’s amazing work over the past 19 years has been in support of her children, to offer other parents what Julie wasn’t able give to her own daughters.
“I did this for my kids,” she said.
“When I get to see my kids at the end of the day when I die, I can say that if I couldn’t fix it for them, I could fix it for everyone else.”
Julie resigned from SMA Australia in June 2022, feeling she had accomplished everything she could at a national level.
However, she still involved in an advisory capacity and as a spokesperson.
“It’s still been full on, and although I resigned I still have the best interests of the community at heart,” she said.
“It was a personal achievement for me to finish what I started.
“I just knew there would be bigger and better things.”
Julie has now started an international charity called Advocacy Beyond Borders (ABB).
ABB works with patient groups and pharmaceutical industry organisations to develop and support local solutions to rare disease testing, treatment and management.
The website for ABB launched on Wednesday 7 June working primarily with Asia-Pacific countries, but Julie said the program is “rapidly” growing across the globe already, with interest in Egypt and Pakistan.
Julie is the distinguished author of ‘Leaving Life Legacies’, where she dives deeper into the loss of her family and how to keep going when life knocks you down.
She also owns two Miss Bella Bridal stores and offers workshops, mentoring and her services as a motivational speaker.
In receiving the OAM, Julie reflected on all she has achieved and how she believes this kind of accomplishment is available to anyone.
“Everyone has what it takes,” she said.
“I’m an everyday person with no formal qualifications and that’s inspiration to say to everyday people, you can do what you set out to achieve.
“It takes resilience and hard work but it is doable with the right people.”
Julie said someone once told her, when she first began with SMA Australia, that she wouldn’t be successful because of her weight.
Despite the negative commentary, Julie has created tangible and visceral change in the lives of countless Australian families.
“The sky is the limit, I am so grateful to be given this award,” she said.
“It makes all those days of pain and all those negative comments, the “you’re never good enough”, it makes it all worth it.
“I’m a middle aged, over-weight lady who just got an OAM and I’m here to say it’s doable.”
