Muscular Dystrophy Australia Annual Report 2024
About MDA
Muscular Dystrophy Australia (MDA), founded in 1984, is the national peak body supporting Australians affected by neuromuscular disease (NMD). Our mission is to provide practical support and hope to those living with muscular dystrophy and related conditions.
As a registered charity, MDA ensures individuals and families have access to essential resources, expert advice, and a compassionate community. We represent over 40,000 Australians with more than 40 types of NMD: conditions that can be life-limiting and progressive, often with no known cure.
MDA is often the first point of contact for those newly diagnosed, offering trusted guidance, emotional support, and practical assistance. Our services are based on evidence and consumer insights, strengthening our extensive support network.
Committed to driving research, advocacy, and innovation, MDA funds projects to slow disease progression and ultimately find a cure. Together, we work toward a future without muscular dystrophy.
“With lived experience at the core of everything we do, MDA continues to bring hope to people living with
disease.”
Catherine Stace, MDA CEO and Adam Walsh, MDA Head of Fundraising & Marketing, pictured at Murdoch Children’s Research Institute with Dr Peter Houweling (Spiderman) and Dr Chantal Cole (Xena Warrior Princess) along with their Superhero Muscle lab members and minions!
Visit from the USA from one of our clients, Ray
32,505 people reached in 2024.
580 people took part in Run For Strength!
1,354 people called our MDA telephone support line.
824 people gave a donation to MDA for the very first time in 2024!
Current Clients by Primary Disability
6179 tickets sold for the 2024 Harley Davidson Raffle!
41,000
An estimated 41,000 Australians live with one or more of 40 neuromuscular conditions. Muscle and nerve disorders affect at least ONE IN 1,000 CHILDREN in Australia. (MCRI)
From the CEO
Dear Friends,
This past year has been one of growth, change and incredible community spirit - and it’s all thanks to you. Your generosity, enthusiasm, and unwavering support is at the heart of everything we’ve achieved together.
Because of you, we’ve been able to invest in new programs, strengthen our team and deepen our understanding of the diverse needs of people living with neuromuscular disease (NMD) and conditions right across Australia.
Through your fundraising efforts, donations, volunteerism and advocacy you’ve helped create real change. From rock and roll dance nights to Superdads walks, treks with friends to superhero dress-ups - every event, every ticket purchased and step taken has contributed to a brighter today and a more empowered tomorrow for people living with NMD. You’ve helped us bring voices with lived experience into our decision-making, through the newly formed Engagement and Innovation Advisory Committee. This will ensure that our programs, services, and research truly reflect and anticipate the needs of those we serve.
As we look ahead, we’re excited to provide more services and support, launch new evidence-informed programs and continue growing the research pipeline. But none of it would be possible without you. Thank you for standing with us, believing in our mission, and being part of this incredible journey.
During the year, we have also had to say goodbye to some wonderful and dedicated people, who have served MDA tirelessly and achieved so much for our community.
In particular, a special thanks goes to our Committee of Management members who retired this year - outgoing Vice President Anne Rogers who served for twenty years, Treasurer Rosemary McKenzie and member Chriss Mannix who both served for ten years. We thank them for their significant contribution and ongoing support.
To provide strong governance and manage transformation, we warmly welcomed incoming Board Members, Treasurer James Young; Chair of the Finance & Risk Management Committee Damian Falkingham; Deputy Treasurer Samantha Kinmond and Karen Taylor, along with strategic advisors to the Board and CEO John Hawker and Richard Dent.
Together, we are driving positive change and making an impact. And together, we will continue to shine a light on neuromuscular disease and conditions.
With gratitude,
In 2024 we proudly celebrated 40 years of operations. Looking ahead, we are excited to launch new programs, strengthen services and support and grow the research pipeline.
Catherine Stace Chief Executive Officer and Company Secretary
MDA Divisions
In May 2024, MDA began implementing a ‘scaffolding’ strategy and budget to transition MDA as a futureready peak national body. Utilising co-design principles, the lived experience of people with NMD is embedded across insights and decisions, delivering a measurable impact.
Engagement & Transformation
As part of Engagement and Transformation Division, Client Services continues to be a first point of contact, dedicated to providing information, support and connections to individuals, families, friends and loved ones, local groups and associations. The scope is broadening to deliver high value, human-centred services and support across Australia’s southern states.
Programs & Impact
The Programs and Impact Division was established during 2024, with the appointment of a divisional head and a program manager. Our division is working to co-create impactful, interventional programs which improve the quality of life of people living with a neuromuscular condition.
Research
This year we developed a priority-led research strategic direction, including disease stream research projects and pipeline, mapping of resources and equipment needs and conducted an environmental scan to better understand the NMD research landscape in Australia. MDA supported patient recruitment onto clinical trials and participation in research survey’s.
Fundraising & Marketing
Fundraising is at the heart of what drives Muscular Dystrophy Australia, enabling us to provide care, support, programs, services and research for people living with neuromuscular conditions. This year we set up our new fundraising team to fund new programs, services, and support to enable our mission.
Funds raised support critical research, including groundbreaking work at the Murdoch Children’s Research Institute and a neuromuscular nurse at Royal Children’s Hospital, Melbourne.
Photo:Tayla Richardson
Dani’s impact: 17 years of transforming neuromuscular care
As the Neuromuscular Coordinator at The Royal Children’s Hospital, Dani Villano has been an essential figure in the treatment and care of children with neuromuscular diseases for over 17 years.
“I had been working on the neurology wards when I heard about a new role funded by MDA in a clinic being set up by Assoc. Prof. Andrew Kornberg,” Dani recalls. “It was exciting—it was a brandnew way of nursing for me.”
What started in 2008 as a small clinic with 40 to 60 patients has now grown to support nearly 600 children and families. The clinic was designed as a one-stop service where patients could see multiple specialists in a single visit. “We’ve always focused on making it as welcoming as possible,” Dani says. “In the old hospital, we had Clown Doctors visit, a games console, and plenty of toys to make the experience easier for kids. The meerkats are always a hit.”
Despite the clinic’s growth, demand continues to outpace resources. “We try not to turn people away, but it has got to a point where we simply have to delay visits,” she explains. With only one afternoon per week dedicated to neuromuscular patients, delays in reviews and care are unavoidable. Dani envisions a future with expanded clinic days, dedicated sessions for young children, and better mental health resources for both patients and their families.
“It’s really sad, I’d love to welcome everyone, but we’re a victim of our own success,” Dani admits. “Sometimes I feel like I’m not doing a great job, but there is only so much one person can do.”
With more funds, MDA will continue to fund neuromuscular nurses to meet growing demand.
MDA has supported Dani’s role from the beginning, ensuring families receive not just medical care, but also emotional support and advocacy. Through continued investment, we can help expand essential services and improve the quality of life for those living with neuromuscular conditions.
A future in motion: MDA’s year of action
JANUARY 2024
Wheels & Reels with Fid
Wheels & Reels fishing with Fid
Also January to May, September to
FEBRUARY 2024
Wheels & Reels with Fid
Superdads Walk
Also January to May, September to
MARCH 2024
Wheels & Reels with Fid
and radio host, Fid Constantinides,
frame boards and tear drop signage, thanks to a grant from the Victorian Fisheries Authority.
January to May, September to December
Hosted by passionate fisherman and radio host, Fid Constantinides, Victorians with NMD and their carers can sign up for a Wheels & Reels Event. These events provide a relaxing and therapeutic morning of fishing, Participants benefit from the tranquility a day on the water can provide, connect with nature, and make new friends at a supportive community event..
On 2 October, at Mornington Pier, we used the new MDA Wheels & Reels A-frame boards and flags, thank you to Victorian Fisheries Authority for the grant that funded the purchase of the signage. ‘Your fishing license fees at work’
and radio host, Fid Constantinides,
up for a Wheels & Reels Event. They will experience a relaxing, therapeutic morning fishing, benefit from the tranquillity that a day on the water can provide, connect with nature, and make new friends in a supportive community environment.
On 24 February, over 120 Superdads walked through Blackburn, raising an incredible $50,000 for Muscular Dystrophy Australia. Founded in support of the Bugeja family and their son Ben, who lives with Duchenne Muscular Dystrophy, this event has raised over $400,000 since 2010.
In October we unvelied new A frame boards and tear drop signage, thanks to a grant from the Victorian Fisheries Authority.
“The support of the Superdads is everything,” says Ben’s father, Brett. “It’s not just about fundraising—it’s about mateship, laughter, and solidarity.”
Funds raised support critical research, including groundbreaking work at the Murdoch Children’s Research Institute. CEO Catherine Stace praised the ‘Superdads’ for their dedication: “Their efforts are driving real change and hope for families impacted by Muscular Dystrophy.”
Eliza Hull at the Malthouse
Our community is at the heart of all we do and what better way to end a week than with MDA friends going to singer songwriter, Eliza Hull’s amazing gig at the Malthouse theatre. It was a great night out for MDA clients.
Also January to May, September to December
The Education Seminar returned to face-to-face, and was held on 14 March at Murdoch Children’s Research Institute. 21 teachers attended, and 5 registered to receive the video of the seminar.
Education Seminar Support
Guide for Teachers and Teachers’ Aides
Hosted by passionate fisherman and radio host, Fid Constantinides, Victorians with neuromuscular disease and their carers can signup for a Wheels & Reels Event. They will experience a relaxing, therapeutic morning fishing, benefit from the tranquillity that a day on the water can provide, connect with nature, and make new friends in a supportive
A new support guide written for schools, special educational advisors, teachers, and teachers’ aides was launched. This eBook helps people understand the challenges faced by students with NMD.
It provides practical advice, top tips, and general strategies to enhance both academic and social experiences and addresses potential issues throughout the educational journey. The strategies and advice in the booklet can be applied to all students navigating the education system who live with a disability.
MDA is here to support educators, to ensure students with NMD can learn, have fun, and achieve their potential.
APRIL 2024
Wheels & Reels with Fid
MDA Divas
Also January to May, September to
MAY 2024
Wheels & Reels with Fid
A reimagined Camp MDA
JUNE 2024
Wheels & Reels with Fid
Client Services – Tour of John Cain Arena
Also January to May, September to
and radio host, Fid Constantinides,
tear drop signage, thanks to a grant from the Victorian Fisheries Authority.
The MDA Divas, a group of volunteer knitters create handmade gifts with love and care, to send to our clients as a thoughtful gesture of support and kindness. This is an ongoing initiative.
Testimonials from clients
“Hi, just a quick note to say thank you for the beautiful throw rug that you have sent to me. It took me by surprise and made my day. It’s comforting to know that there are still people like yourselves in the world who show genuine care towards others.
I shall be using the rug heavily now in winter so please accept my deepest heartfelt thanks to you and the team involved.” - D
n n n
“Hey Sandra, Team MDA and the very talented volunteer. What a lovely surprise to have my husband bring me a little package from the letter box this morning.
Thank you so much for the gorgeous hand knitted gloves and card. I will wear them with pride –they are so pretty with the added knitted flowers.
Thank you for your kindness, support and connection. So thoughtful of you’’ - G
Also January to May, September to and radio host, Fid Constantinides,
new friends in a supportive community environment.
After a five-year hiatus, we began planning to bring back Camp MDA as a reimagined experience for children and young people aged 1017 with NMD.
In October we unvelied new A frame boards and tear drop signage, thanks to a grant from the Victorian Fisheries Authority.
In April 2025, Camp MDA will return as an exciting three-day staycation in Melbourne where we will deliver a range of engaging activities to encourage participants to learn life skills, build identity and connection, and practice new self-advocacy tools in a safe space.
Thank you to Michael Kelm, whose generous donation has enabled our participants to attend the 2025 Camp MDA with scholarship support.
Larapinta Trail
Bridie, Anita and Meg trekked the Larapinta trail and shared their heartfelt stories on behalf of loved ones living with NMD. They smashed their target and had a memorable experience in the Northern Territory. It goes to show how anyone can turn their passion or holiday into a fundraising event for a cause close to them!
and radio host, Fid Constantinides,
Accessibility Inclusion in Public Settings
benefit from the tranquillity that a day on the water can provide, connect with nature, and make new friends in a supportive community environment.
Thanks to Olympic Park and Get Skilled Access who organised an accessibility tour of John Cain Arena, gaining input from our very own Client Services Manager (Paula Hodgson) and other people with lived experience.
In October we unvelied new A frame boards and tear drop signage, thanks to a grant from the Victorian Fisheries Authority.
Tour of Walter & Eliza Hall Institute of Medical Research (WEHI)
Marnie Blewitt presented on the latest FSHD Research. Marnie and her team are working on a number of projects to improve diagnosis, treatment and prevention of FSHD muscular dystrophy. The presentation was followed by a tour of the WEHI lab.
JULY 2024 Source Kids Expo
AUGUST 2024
Wheels & Reels with Fid
Also January to May, September to
Wheels & Reels with Fid
Run for Strength
Also January to May, September to
SEPTEMBER 2024
Wheels & Reels with Fid
Super September
and radio host, Fid Constantinides,
grant from the Victorian Fisheries Authority.
MDA exhibited at the Source Kids Expo which was held at the Melbourne Convention and Exhibition Centre from 5 - 6 July
Source Kids is a unique event focused on children, youth, and young adults living with a disability and brings together all the latest products, services, and technology, giving parents, carers, and professionals the rare opportunity to see everything under one roof.
MDA promoted our services and programs to more than 3300 people during the event and gained connections with people who have an interest in our work including new clients.
and radio host, Fid Constantinides,
therapeutic morning fishing, benefit from the tranquillity that a day on the water can provide, connect with nature, and make new friends in a supportive community environment.
This year’s Run for Strength at Princes Park, Carlton saw 580 participants come together to raise $44,000. These funds directly support an MDA Paediatric Neuromuscular Nurse, ensuring children with NMD receive the care they need.
In October we unvelied new A frame boards and tear drop signage, thanks to a grant from the Victorian Fisheries Authority.
The event was made even more special with Australian Champion Marathon Runner Steve Moneghetti, who joined us as MC to cheer on participants and inspire the crowd. The atmosphere was filled with energy, unity, and determination, highlighting the strength of our community.
Families, corporate teams, and individuals of all ages showed up in force: many of whom have a personal connection to muscular dystrophy, making their participation even more meaningful.
Visit of Muscular Dystrophy UK
Our Client Services Manager, Paula Hodgson, took time out whilst on her holiday in London to visit the office of Muscular Dystrophy UK.
It was an inspiring opportunity to connect, share ideas, and strengthen our collaboration in the fight against muscular dystrophy on a global scale.
Also January to May, September to and radio host, Fid Constantinides,
connect with nature, and make new friends in a supportive community environment.
In October we unvelied new A frame boards and tear drop signage, thanks to a grant from the Victorian Fisheries Authority.
In 2024, we rebranded our longstanding Superhero Week to Super September: an exciting month-long initiative bringing together schools, businesses, and individuals to raise funds and awareness for NMD. This change enabled greater participation and flexibility, creating significant impact.
Corporate support from Davies Collison Cave (DCC) Employees including three with lived experience of NMD came together to raise awareness and support for Australians living with muscular disabilities.
Schools across Australia
From kindergartens to high schools, students, teachers, and parents embraced the spirit of Super September.
Australia
During September, the Melbourne Town Hall and Rialto building lit up to commemorate people living with NMD. We also saw the building light up in Green for World Myotonic Day.
Melbourne lit up for Muscular Dystrophy
Employees from Davies Collison and CEO, Catherine Stace
OCTOBER 2024
Wheels & Reels with Fid
Satellos DMD Clinical Trial
NOVEMBER 2024
Wheels & Reels with Fid
Deloitte presentation – Making AI a habit
DECEMBER 2024
Wheels & Reels with Fid
Our Christmas Appeal
Also January to May, September to and radio host, Fid Constantinides, community environment.
David MacPherson, Ambassador for Satellos DMD Clinical Trial
In October we unvelied new A frame boards and tear drop signage, thanks to a grant from the Victorian Fisheries Authority.
MDA was selected as the exclusive patient recruitment partner for Statellos Bioscience’s SAT-3247 clinical trial. This research is uncovering new approaches to treating DMD. Satellos Bioscience is enrolling adult DMD patients in a phase 1 safety and pharmacokinetics study of a new oral treatment approach. MDA received a number of EOIs for this from young adults aged 18+ who were followed up for suitability.
“We’re honored to have the opportunity to work with a group so committed to improving the lives of the patients they represent!”
– Courtney Wells SVP Clinical Development Operations, Satellos
Also January to May, September to
Also January to May, September to
and radio host, Fid Constantinides,
benefit from the tranquillity that a day on the water can provide, connect with nature, and make new friends in a supportive community environment.
In October we unvelied new A frame boards and tear drop signage, thanks to a grant from the Victorian Fisheries Authority.
In November, we presented an interactive webinar designed to showcase how AI can simplify daily tasks and streamline work processes. Delivered in conjunction with Deloitte, speakers: Danielle Frillion, Deloitte Partner and Dina Bassile, Tibi Access discussed what AI is and how to use it effectively a how to assess content reliability; everyday applications for AI and how it can support your work and boost productivity.
The session was well attended and the feedback excellent. Thank you to Deloitte for including MDA in their Impact Week and to Dina for sharing her expertise.
and radio host, Fid Constantinides, a day on the water can provide, connect with nature, and make new friends in a supportive community environment.
In October we unvelied new A frame boards and tear drop signage, thanks to a grant from the Victorian Fisheries Authority.
Our December Appeal was a success, raising an incredible $34,000 to support vital research into NMD. Thanks to the generosity of our community and the matching donation from The Grangers Foundation, every contribution had double the impact, helping to accelerate breakthroughs in treatment and care.
This year’s appeal highlighted Nerida’s story, a mother navigating life with myotonic dystrophy alongside her two sons. As a progressive and unpredictable disease, myotonic dystrophy symptoms (some life-threatening) can appear at any stage of life. For Nerida’s sons, both in their 20s, the impact of the disease is already taking hold. Though still able to live independently and work, they battle fatigue and muscle weakness, forcing them to adjust their lifestyles to accommodate the slow but steady deterioration of their muscles.
“I don’t know what’s going to happen in the future for the boys. Because you do slowly get worse, in the future they might need things like wheelchairs or walkers… or no stairs.”
The urgency of research into NMD has never been clearer. Every dollar raised helps fund scientists like Dr. Chantal Coles, who are working to identify new therapies that could slow disease progression and improve quality of life for families like Nerida’s.
Dina Bassile and Danielle Frillon during the Deloitte presentation
Nerida and her family
Case Study
Honouring Chris’ legacy
Chris was more than just a cousin, he was the heart of every family gathering, always bringing laughter, warmth, and joy to those around him. A true larrikin, Chris had a knack for making people smile, whether through his sharp wit, love of gaming (where he remained undefeated), or his signature cheeky sense of humour.
His presence was magnetic, and his memory continues to bring comfort to those who knew him.
For Amy Bourke, Chris wasn’t just family; he was a source of endless joy and inspiration. Chris lived with Duchenne Muscular Dystrophy, a condition Amy only truly began to understand as she grew older. The realisation of how little awareness there was about muscular dystrophy drove her to take action. Even while Chris was alive, she was committed to supporting further research through donations and spreading awareness among friends and colleagues. Since his passing, that commitment has only deepened. Honouring Chris and the 28 wonderful years he was here is a lifelong mission: one she carries forward with passion and determination.
One of the ways Amy has kept Chris’ legacy alive is through her work at Commbank. She has successfully nominated MDA for community grants three times, securing much-needed funding to support those
living with neuromuscular conditions. Visiting MDA’s team in Melbourne last year reinforced just how impactful these contributions are. The launch of the new InnovAITe program is something she is incredibly excited about, as it will provide accessible and innovative support to those who may not be able to connect in person.
Amy’s message to others is simple: awareness and support go a long way. Whether through donations, engaging with MDA’s initiatives, or even spreading the word, every small action contributes to a larger movement. Her hope is that one day, there will be a cure for muscular dystrophy. While Chris may not be here to see that day, his spirit lives on in the ongoing fight to create a world without muscular dystrophy.
Through the work of MDA and dedicated supporters like Amy, those living with neuromuscular conditions can feel seen, heard, and empowered to live their lives to the fullest.
Morning tea with Amy Bourke and our team at the MDA office to celebrate the Commbank community grant
The MDA Board 2024
The activities of Muscular Dystrophy Association Inc are overseen by a volunteer Board. All members of the Association are eligible to nominate themselves for the Board, which is responsible for strategic leadership and advice, governance and fiduciary oversight. The CEO reports to the Chair of the Board.
PROFESSOR JASON WHITE
Chair of the Board
Director of Research at Charles Sturt University
With over 20 years of research experience, Prof Jason White has led key projects funded by Meat and Livestock Australia and Muscular Dystrophy Australia. As Director of the Research Office at Charles Sturt University (CSU) since 2018, he also serves on CSU’s committee of management and National Health and Medical Research Council Grant Review Panels.
With over 20 years of experience in finance and corporate services across multiple sectors, James has led strategic financial growth and transformation programs in Australia and overseas. A Certified Practising Accountant (CPA) and Graduate of the Australian Institute of Company Directors (GAICD) graduate with certification from Harvard Business School, he is deeply committed to MDA’s mission and community.
Deputy Treasurer
As Chief Finance Officer at RULE Prostate Cancer, Samantha Kinmond leads financial operations, risk management, strategic development, securing grants and global partnerships. With experience across ASX-listed companies and the not-for-profit sector, she also serves on Boards for Athletics Victoria, Swimming Victoria, and Brunswick Netball Club.
Founder and Director
Driven by his son’s diagnosis, Boris founded Muscular Dystrophy Australia and led it for over 30 years, pioneering a multi-disciplinary research centre and clinic. Now a Life Member, he brings expertise in strategy, leadership, philanthropy, and has previously served on the board of The Florey Institute.
Treasurer
JAMES YOUNG
SAMANTHA KINMOND
BORIS M. STRUK FAICD AFAIM
Director
As CEO of the Specialised Assistance School for Youth (SASY), Karen Taylor brings expertise in strategic planning, change management, and workforce development. A graduate of the Australian Institiute of Company Directors (AICD), she has led national VET policy initiatives, top private RTOs, and her own consulting business.
DAMIAN FALKINGHAM
With over 20 years of experience across strategy, sales, underwriting, and operations, Damian has led teams in NFPs, private firms, and global corporations across AU, NZ, SEA, and Greater China. A hands-on leader, he empowers teams to build resilience, think creatively, and deliver sustainable, customer-focused results.
Strategic advisor to the Board/CEO
After a corporate career and running a management consultancy, John now focuses on philanthropy, including 12 years of volunteer work with Alfred Health. With expertise in business strategy and fundraising, he supports MDA’s mission and holds degrees from Monash University and Melbourne Business School.
Strategic advisor to the Board/CEO
Richard is a longstanding community leader in many fields, focusing on governance, strategy and leadership in non-profits. Richard has exercised leadership with disability and research communities for almost 30 years and was an instrumental advocate for the NDIS.
MDA Board is grateful for the expertise and counsel of strategic advisors John Hawker and Richard Dent.
Director
KAREN TAYLOR
JOHN HAWKER
RICHARD DENT
Engagement & Innovation Advisory Committee
In August, we called for applications from passionate healthcare professionals, parents, carers, and people with lived experience of neuromuscular disease (NMD) to join our new Engagement and Innovation Advisory Committee.
The Engagement & Innovation Advisory Committee (EIAC) was established as an organisational advisory committee to provide lived experience feedback and advice from clients, families and health professionals to co-create, steward and implement the MDA strategic plan and theory of change to deliver organisational impact goals.
The committee works to provide input into MDA’s strategic direction and advocacy efforts, ensuring that the voices of those affected by NMD are heard and incorporated into our work.
The members of the committee will serve for two years, and their input will ensure we co-design all programs, services and activities to meet the needs of our key stakeholders.
The inaugural meeting was held in November 2024 and focused on proving input into a stakeholder engagement project and the relaunch of Camp MDA.
The advisory committee will meet quarterly, with one in-person meeting scheduled each year.
Thank you to the EIAC members for their lived experience input which guides our work.
PAUL BUGEJA
Paul Bugeja is a published author and media professional, his broader professional background extending to arts and tertiary education administration, professional acting, directing and TV quiz show production. Diagnosed with FSHD as an adult, Paul has navigated life never denying the omnipresent disability but rather using it as much as possible as inspiration to take life by the horns, walk the road less travelled and fuel his endeavour. He is currently writing an autobiographical telling of his journey with FSHD, working title “The Road Less Stumbled”.
ELVIRA ALIC TARRANT
Elvira Alic Tarrant is a driven advocate, mother, wife, and first-generation Australian living with Spinal Muscular Atrophy (type 2). As a dedicated Service Coordinator at Support Your Way Disability Services, she excels in service coordination and stakeholder engagement. Previously a presenter at the Disability Services Commissioner, Elvira promoted positive organisational cultures and enhanced disability awareness. She also played key roles as a presenter, producer, and set designer for the award-winning community television program No Limits, empowering individuals with disabilities through media representation. Passionate about improving access and representation in the disability sector, Elvira actively advocates for diverse communities and enjoys sharing her lived experiences to challenge societal misconceptions and foster meaningful exchanges.
LUKE DAVID
Luke David is CEO of Support Your Way Disability Services. He was diagnosed with Nemaline Myopathy, a rare muscular disorder, at just 18 months old. The condition has significantly impacted his mobility and strength, requiring him to use a wheelchair from the age of three. Luke’s journey with Muscular Dystrophy Australia began in 2004 when he attended MDA camps, where he connected with others facing similar conditions. It was at one of these camps he discovered powerchair sports, a pivotal moment that set him on a path of competitive training for the past 19 years. Luke credits the sport with having the biggest impact on his life, providing both a physical outlet and a sense of community.
DAVID MACPHERSON
David MacPherson lives with Duchenne Muscular Dystrophy (DMD), he is particularly interested in genetics, mechanisms of disease and research with medical relevance. David previously completed a Bachelor of Science Advanced Research (Honours) at Monash University. Now, he is pursuing a Master of Genome Analytics, where he’s learning skills to analyse and interpret genetic and medical data. David has a desire to use his passions and skills to improve the quality of life of individuals affected by genetic diseases. In his free time, he enjoys watching AFL, cricket and rugby. David also loves dogs and has a toy poodle who likes chasing rabbits and going for walks.
KATE CARROLL
Kate Carroll is a senior clinician physiotherapist based in the Neurology Department at the Royal Children’s Hospital in Melbourne. Kate works as a researcher and clinician with children who have neuromuscular disorders and was a founding member of the RCH multidisciplinary Neuromuscular clinic. In 2008 Kate completed her PhD and has since contributed to more than 40 research projects including international pharmaceutical trials, natural history studies in varied roles of investigator, clinical evaluator and study coordinator. She has initiated and undertaken local research studies together with other members of the RCH Neuromuscular Research Team, co-authoring a number of publications. Kate’s favourite part or her role is seeing children from the Neuromuscular clinic grow up and become confident and successful young adults.
DANIELLA VILLANO
Daniella Villano is a neuromuscular nurse consultant, based in Melbourne VIC. Daniella has been working as a paediatric nurse as part of the Children’s Neuroscience Centre since 2004. In 2007 she commenced her role as the nurse consultant working with patients and families affected by neuromuscular conditions. Her role encompasses overall coordination of the clinical research and clinical care program through the Royal Children’s Hospital Neuromuscular service. Daniella is one of Australia’s leading neuromuscular nurses and is passionate about supporting patients and families in achieving the best quality of life and health outcomes.
ASHLEE CRUZ
Ashlee Cruz is a Senior Occupational Therapist at The Royal Children’s Hospital, Melbourne. Ashlee has worked as an Occupational Therapist across a variety of community and hospital based pediatric settings over the past 14 years. During this time, she has developed a passion and expertise in working with children and adolescents with neurological conditions, and in particular neuromuscular disorders.
DR TASH (NATASSJA) BILLICH
Dr Tash (Natassja) Billich is a clinical and research accredited practising dietitian. She has both clinical and research experience in neuromuscular conditions. She has clinical experience working across two paediatric neuromuscular clinics at the Royal Children’s Hospital and Queensland Children’s Hospital. She completed her doctoral research in 2021 which involved co-designing a nutrition and healthy weight program for boys with Duchenne muscular dystrophy. She now utilises findings from her PhD to work directly with families through her private clinic.
YVONNE HARVEY
Yvonne Harvey is an experienced educator with 30 years of expertise spanning primary and secondary education in both state and independent sectors across Australia and the UK. She is skilled in school development, educational leadership, data-informed learning strategies, and fostering student wellbeing, with a focus on smooth transitions between kinder, primary, and secondary levels. Passionate about lifelong learning and equity in education, Yvonne is dedicated to improving outcomes for all students and emphasises strong partnerships with parents in the learning journey. As a member of the MDA Engagement and Innovation Advisory Committee, she advocates for advancing educational opportunities for those impacted by muscular dystrophy.
MARY ORGILL
Mary Orgill is Head, Programs and Impact at MDA and is an accomplished strategic marketing, programs and communications leader. She has extensive experience in the areas of health, not-for-profit and education. Mary has executive leadership skills involving strategy development, program development, change management, communications, stakeholder engagement, evaluation, policy, and governance. Mary is passionate about program and campaign measurement and brings skills in program development, assessing and measuring impact to her role at MDA.
CATHERINE STACE
Catherine is Chief Executive Officer and Company Secretary at Muscular Dystrophy Australia and has more than 30 years’ experience in the corporate and not-for- profit sectors. Her expertise is in developing transformative strategies and leading the business growth across reputation, revenue and relationships, incorporating the patient’s lived experience as central to impact and societal change. Her role at MDA is to lead the mission through parallel streams of program delivery designed to optimise the lived experience of Australians living with NMD and to foster a research ecosystem to stem disease progression and regenerate muscle. Catherine previously held leadership positions in the NFP sector spanning health and medical research, ageing and increased longevity and youth. She is mother to two young adults and believes that population health and the burden of disease will exponentially improve when viewed through the scientific lens of the ‘whole of person’ as a living system.
Our MDA Ambassadors
Muscular Dystrophy Australia Ambassadors are passionate advocates who support key fundraising campaigns, events, and appeals. By raising awareness, engaging with the public, and encouraging donations, they play a vital role in supporting people living with neuromuscular conditions across Australia.
Angela Bonus is a yoga instructor, keynote speaker, and passionate advocate for people living with rare muscle disorders after being diagnosed with Neutral Lipid Storage Disease at age 30. Refusing to be defined by her condition, she created ‘Yoga Reimagined’ to support others with muscle weakness and continues to inspire through her journey of resilience, movement, and motherhood.
Diagnosed with Nemaline Myopathy as a toddler, Luke David found strength and community through powerchair sports after attending an MDA camp in 2004. This was a turning point that led to 19 years of competitive training. Now a passionate advocate, he raises awareness about muscular dystrophy and dreams of seeing powerchair sports included in the Paralympics.
Diagnosed with Congenital Muscular Dystrophy at six months old, Tugba Acisu has never let her condition limit her love for adventure, traveling the world and pursuing a degree in Education Support to inspire students with disabilities. As a part-time team member at Muscular Dystrophy Australia and ambassador for Run for Strength, she is passionate about sharing stories, building community, and championing inclusion.
Diagnosed with Becker Muscular Dystrophy 20 years after his first symptoms, Neofitos Paul Constantinides (FID) continues to defy expectations by staying active through wheelchair sports, hosting MDA’s ‘Wheels and Reels,’ and presenting on Casey Radio. He credits his resilience to the unwavering support of his wife Terri and daughter Sophie.
Dr. Chantal Coles is a Senior Research Scientist at the Murdoch Children’s Research Institute, leading groundbreaking research into therapies for Duchenne, FSHD, and LGMD by studying immune responses and using patient-derived stem cells. Her work is advancing treatment options and deepening our understanding of muscular dystrophy.
Dylan Marguccio, lives with Duchenne muscular dystrophy. He is an aspiring singer and Carlton Football Club supporter. He is best known for his powerful appearance on Season 9 of The Voice Australia. In December 2023, he released a heartfelt rendition of John Lennon’s So This Is Xmas to support MDA, with proceeds from the song –which reached number 3 on the iTunes charts – going toward the cause.
Born and raised in Geelong, Zac Soutar found early success in karting before launching Team Soutar Motorsport with his father to compete in the Australian Formula Ford Championship, finishing 3rd in 2018 and 2nd in 2019. He now races in the TCR Australia Series, where he made history in 2022 as the first privateer to win a race and has since claimed multiple podiums.
A huge thank to all MDA Ambassadors for your support.
Legendary marathon runner Steve Moneghetti, a four-time Olympian and Commonwealth Games gold medallist, believes running is not just about personal achievement but creating positive impact. He proudly supported Run for Strength 2024 as a celebration of solidarity, encouraging everyone to run together to raise awareness and funds for those living with NMD.
Thank you
MDA extends our gratitude and thanks to our community of supporters. Without your generosity we would not have been able to provide much needed support.
Trusts and Foundations:
• CommBank Staff Foundation
• Joe White Bequest
• Grangers Foundation
• White Fang Fund, a Charitable Fund Account of Lord Mayor’s Charitable Foundation
Corporate and Organisations
Department of Families, Fairness and Housing
Murdoch Children’s Research Institute
John Cain Arena
Muscular Dystrophy, United Kingdom
Victorian Fisheries Authority
Walter & Elza Hall Institute of Medical Research (WEHI)
The Pink Panthers, Blackburn Football Club
Pitcher partners – Jason Scully, Estelle Lim and Kylee Burns
Belle property – Tim Noonan, Narelle Waller, Allidia
Ferrari Griffin conveyancing – Amber, Leanne and Paul
Supporting organisations
Andrew McGarry – Recruit for Good
Aaron Periera - Persistence Media
Davies Collison Cave
Deloitte
Moray & Agnew
Tamara Jenkins – Esencia communications
Jonathon Wright
Melbourne Town Hall
Rialto – Melbourne
Dave Hughes – Plum Publishing
Individuals
• Dina Bassile
• Jason Beardsley
• Mar nie Blewitt
• Amy Bourke
• Brett Bugeja
• Katrina Bugeja
• Bugeja Family
• Terri Cole
• Fid Constantinides
• Caroline Dazey
• Lee Emberton
• Danielle Frillion
• Johanna Hayes
• Laura Healy
• Kalvin Hopper
• Eliza Hull
• Michael Kelm
• Nerida Lazslo and her family
• Tracey Lowe
• David MacPherson
• Dylan Marguccio
• Lindsay Merritt
• Huma and Anita Mullick
• Paul Murray
• Laurie Norton
• Meg Pearse
• Bridie Sabadasz
• Ineke Struk, MDA Co-founder
• Leanne Watson
• Everyone involved in the 2024 Superdads event
• Everyone involved in Run for Strength
• Everyone involved in Super September
MDA thanks our friends and collaborators across the space of Muscular Dystrophy
• Dr’s Eppie Yiu and Ian Woodcock, Paediatric Neurologists, Royal Children’s Hospital
• Robin Forbes and Emma Galea - Murdoch Children’s Research Institute Neurological Patient Registry and Biobank
• Dr’s Peter Houweling and Chantal Coles – Murdoch Children’s Research Institute and Australasian Neurological Network and their ‘Superhero’ research team.
• Courtney Wells and Yvonne Peiris, Satellos
• Angela Lek and the team at Muscular Dystrophy America
• Charlotte Sangster, MDNSW
• Penny Deavin, MDQLD
• Hayley Lethlean, NMDWA
• Rachel Spencer, MDFA
• Diana Carter, MD Tasmania
• Emma Weatherley and the Board of FSHD Global, founded by Bill Moss AO.
• Sandy Kerwin, Save Our Sons
• Andrew Giles, Neurological Association Australia
MDA thanks the expert panel of presenters for our Education Seminar
• Dr Kathryn Irving, Paediatric Neurologist, Royal Children’s Hospital
• Dr Adam Partridge, Clinical Psychologist, Buckley Consulting Group
• Kate Carroll, Senior Clinician and Research Physiotherapist Royal Children’s Hospital
• Erin Georgiou, Senior Occupational Therapist, Royal Children’s Hospital
• Dr Chantal Coles - MDA Research Fellow, Murdoch Children’s Research Institute
• Dylan Marguccio - My School Experience by a Duchenne MD student, Year 12 high school graduate 2023
• Daniella Villano, Neuromuscular Nurse Consultant
A huge thank you to the following organisations and individuals for your contribution to our eBook.
• Neuromuscular Clinic, Royal Children’s Hospital, Melbourne
• Daniella Villano, Neuromuscular Nurse Consultant
• Kate Carroll, Senior Clinician and Research Physiotherapist
• Ashlee Cruz and Erin Georgiou, Senior Occupational Therapists
• Dr Adam Partridge, Clinical Psychologist, Buckley Consulting Group
This project was funded by an Australian Government, Department of Social Services - Information Linkages and Capacity Building (ILC) program grant.
Bequests
Our sincere gratitude to generous supporters who left a Bequest as a Gift of Hope in their Wills.
A. Corbett
A. Handley-Bramley
T. Ly
T. Palios
B. Ransom
K. Stewart
The Late J. T. Blackett-Smith
The Late H.C. Brougham
MDA Divas
Maria Kouppas, Ineke Struk, Christine Brown, Denise Edwards, Beryl Smith, Raeleen Taylor, Gaye Cariss, Margaret McCarthy, Ruth Hunter, Judy Hay, Bev Grav, Aileen Mitchell, Viv Waterford, Lynn McDowell, Pam Thompson, Moyra Davies, Maree Bell, Mel Van Galen, Di Bambra, Sue Boyce.
In Memoriam 2024
We honour all people with NMD who have passed and pay our deepest respect. It through their stories and experiences that move us forward towards our mission.
Anita Sarazin
Max Krafft
Alan Reynolds
Robert Healy
Gerry Kelders
Christine Skiadas
Max Petruccelli
Rajiv Lal
Trent Shaw
Ian McCulloch
If we have omitted anyone, please contact us so we can update our records and please accept our apologies for the oversight.
A special thanks goes to our Committee of Management members who retired from the Board this year - outgoing Vice President Anne Rogers who served for twenty years, Treasurer Rosemary McKenzie and member Chriss Mannix.
Join Us in Offering a Gift of Hope for their future
Like Gary, you could offer a Gift of Hope to those living with neuromuscular diseases by leaving a Gift in your Will to Muscular Dystrophy Australia.
We have partnered with online Will provider Gathered Here to offer you the opportunity of writing a FREE WILL. They have seen over 30,000 Wills written via the platform and an estimated $350 million pledged to worthy causes across the country. We’re excited to partner with Gathered Here to make Bequesting a Gift as easy as possible for our supporters.
Every year, thousands of Australians like Gary, choose to include a gift to charity in their Will. For Muscular Dystrophy Australia, gifts in Wills help us fund research, deliver life-enriching programs and services to help to improve the lives of all our clients. Without these gifts, we would have to severely scale back the work we do.
Thankfully, this type of giving is becoming more popular.
Join us in offering hope for a
by pledging a Gift in your Will to Muscular Dystrophy Australia.
Please get in touch via email bequest@mda.org.au or contact us on 03 9320 9555
Supporting Muscular Dystrophy in any way possible is a passion I hold very close to my heart.
I was very young in the late 1960’s, but I remember very well the pain my entire family suffered when Duchenne Muscular Dystrophy took my older brother from us at the age of 14.
Anything that I can do to stop this happening to other families is an extremely worthy cause.
That is one reason that I am Bequesting to MDA in my Will.
Gary J.
Brighter Today and an Empowered Tomorrow
Financial Information
Thank you to our community – it is because of your generosity, support and contribution that we were able to deliver programs, services and support for people living with neuromuscular disease (NMD) and conditions.
We are extremely grateful for the bequest funds received during 2024 in memory of a loved one with NMD. These funds go directly towards servicing the vital needs of our client and patient community, including children, their families and carers. A heartfelt thank you.
Here is a summary of our performance for the year as presented to our Annual General Meeting on Monday 13 May 2025.
SUMMARY
Money raised towards our mission in 2024 came from the following sources:
TOTAL INCOME
JANUARY-DECEMBER 2024
Donations & Bequests
Client services
Government
Investments
Campaigns and Appeals
Other
1,605,813
1,480,912
124,901
(60,000)
