2023 Muscular Dystrophy Australia Annual Report

Muscular Dystrophy Australia Annual Report 2023

About MDA

Muscular Dystrophy Australia was founded in 1984 and is the national peak body for those living with neuromuscular disease (NMD) across Australia.

Our Mission is to provide practical support and hope to both the muscular dystrophy and other related neuromuscular disease communities. We are often the first point of call when someone receives their diagnosis. We provide a safe place for families and those living with NMD to turn to for advice, practical support, and a friendly ear.

MDA represents the needs of more than 40,000 people living with one of 60 different types of NMD, which affect muscle strength. The support and services we provide use evidence-based and consumer-informed approaches to optimise the lived experience of NMD.

Our team’s key strength is our expertise in all forms of neuromuscular disease. Over the years we have built up a rich database of referral information and well-established support groups.

The MDA funded research aims to stem disease progression and support innovative research projects that lead us to a cure. Together, we are a powerful force for people living with NMD.

With lived experience at the core of everything we do, MDA is working to bring hope to people living with NMD.

Dylan Marguccio and his mum Johanna Hayes.

Wayne Francis and Matt Preston at the 2023 Superdads event. Cover image

Fid Constantinides and Paula Hodgson at Run for Strength 2023.

Snapshot of MDA

60

There are more than 60 different types of NMD.

NMD causes progressive weakness and loss of muscle mass.

There is currently no cure for any type of NMD.

41,000 50%

An estimated 41,000 Australians live with one or more neuromuscular conditions.

Muscle and nerve disorders affect at least ONE IN 1,000 CHILDREN in Australia. (MCRI)

of the money we receive comes from our generous donors, supporters and our fundraising activities

WHERE DOES THE MONEY GO?

Funds received go towards delivering client support to all people affected by NMD.

MDA funds research into finding better treatments and a cure for NMD.

From the desk of the President and CEO

Welcome to Muscular Dystrophy Australia’s 2023 Annual Report.

Reflecting on the past year, we are filled with gratitude for the unwavering support and dedication of our community. Together, we have achieved remarkable progress in advancing our mission to provide practical support and hope to the Muscular Dystrophy and other NMD communities.

During the year, CEO, Jan Chisholm stepped down to pursue a new career path in Western Australia. We would like to acknowledge her contribution to Muscular Dystrophy Australia (MDA) and we wish Jan all the best for the future. As incoming CEO I am honoured to join MDA to work with our Chair and the Committee of Management as we conclude the current strategy and look to the future.

At the heart of everything we do lies our unwavering commitment to our clients and community. It is their resilience, strength, and spirit that drive us forward in our mission. Our focus areas and all MDA initiatives are grounded in evidence, ensuring our strategy is informed and impactful in addressing the needs of individuals with neuromuscular disease (NMD) in delivering real hope through research and client services.

Our team is diligently working on shaping our future strategy, with a focus on achieving our mission through scalability and sustainability to expand our reach and impact. The insights gleaned from valuable data have been instrumental in informing our forward planning strategies, enabling us to better address the evolving needs of our clients and community.

In line with our commitment of growth and innovation, we are scaling our client programs to ensure broader access to essential services and support.

MDA is passionate about ensuring the voices of our clients are heard and has actively sought their input and incorporated their experiences into our programs and initiatives. In addition to our existing client support programs, we are working to schedule a full calendar of activities following the feedback received in the 2023 Client Survey.

We have meticulously crafted key messaging and developed compelling case studies to effectively communicate the impact of our work and the challenges faced by individuals living with NMD.

Our Christmas appeal proved to be instrumental in reaching out to the community with essential messages about NMD and its various types. Through this initiative, we worked to raise awareness and garner crucial support for our cause. A big thank you to Dylan Marguccio and his mum Joh for allowing us to feature them in our campaign.

There is much to be optimistic about with our research strategy across all types and stages of NMD. The progress made signifies hope for breakthroughs in treatments and therapies.

Our ongoing support for the Muscle Clinic at the Royal Children’s Hospital underscores our dedication to providing comprehensive care, new treatments, and resources for children with NMD. Looking ahead, we are excited to announce a new research strategy for 2024, which will guide our efforts in advancing scientific discovery and improving patient outcomes.

We would like to take this opportunity to acknowledge Rosemary McKenzie for her invaluable contribution to the MDA Board as Treasurer. Her dedication and expertise have been instrumental in our financial stewardship. We also extend a thank you to Anne Rogers who stepped up as acting President during the year, your guidance and support during this time was appreciated. Additionally, a huge thank you to all MDA Committee of Management for their contributions to MDA throughout 2023.

Our financial result reflects an organisation that is taking prudent measures to be efficient and effective, ready for growth, enabling us to maximise our impact while ensuring long-term sustainability.

We extend our sincere thanks to all our supporters, donors, fundraisers, volunteers, and staff members for their tireless efforts in making a difference in the lives of individuals with NMD. We thank our clients for trusting us to support their needs and wellbeing; it is our honour and the reason why we exist.

As we look to the future through a strategic lens, together with our values, determination, and agility, we are confident that our collective efforts will continue to make a measurable difference to Australians living with neuromuscular disease. We remain dedicated to achieving our goals as we look to refocus in 2024, we place a strong emphasis on growing our organisation and continuing to place the needs of our clients at the centre of everything we do.

Thank you for your continued support and partnership towards our mission.

Catherine Stace, Chief Executive Officer Associate Professor Jason White PhD, President

DYLAN’S STORY

Aspiring singer and Carlton Football Club supporter, Dylan Marguccio, best known for his inspirational appearance on Season 9 of The Voice Australia, released a powerful rendition of John Lennon’s classic Christmas carol ‘So This is Xmas’’, with all proceeds going to Muscular Dystrophy Australia (MDA) in December 2023. Thanks to the support of our community, the song reached number 3 on the iTunes charts.

Dylan has always loved to sing. When he was about eight years old - he got a karaoke machine for a present and has been singing ever since.

Dylan has Duchenne muscular dystrophy, which is a muscle wasting condition which deteriorates muscles over time. We asked him how this impacts his daily life, and he said,

“Getting ready in the morning, it takes twice as long than an everyday person getting in the car, getting to work, even socially. Making friends is really tough, but I get through it. That’s one positive I take out of it, I get through the day and that’s what I’m happy with.

“I can’t walk or transfer, so I have to be hoisted, which many people don’t have to do. It is actually quite uncomfortable in like a harness which is annoying, but you have to do it because there’s no other way. Going on a ramp into a car is sometimes a bit how do I say it? embarrassing. It’s not really, but sometimes it is because you’re not stepping out of a car opening a door. You have to get someone to put the ramp down, be locked into the chair and put the seatbelt on. You can’t do it yourself. And at school as well. You have to have someone there all the time to help you get things out of your bag. You can’t get it yourself, can’t get your own pencil. So that’s some of the things I struggle with.

“I’m getting used to it now. It’s just normal in life. You just have someone with you to help. And that’s what I do now. I just stay positive. I don’t worry about what other people say to you.”

We asked Dylan about his audition for The Voice Australia and what his dreams are, he said,

“When I auditioned for The Voice Australia in 2020, I sang ‘I Want You Back’ by the Jackson Five. It was one of the greatest opportunities I’ve had to get out there, not be judged on your disability, but on your actual voice. Because they didn’t see who I was when I sang. They only saw who I was afterwards. That’s all I wanted to do, be judged solely on my voice.

“A disability isn’t a barrier. You should be able to do what your dreams are.

“My biggest dream is to become an AFL commentator. I practice at home every day. My mum has listened to me commentate and cracked it when I get something wrong. But that’s my biggest dream. And just find a job in the media somewhere in sports.

Now 18, Dylan embodies the spirit of the NMD community with his passion for singing and the mighty Carlton Football Club, demonstrating resilience and a passion for life that we can all look up to. He has completed high school and is working three days a week as a teacher’s aide at the primary school he attended.

I’ve decided to put my hand up [to help MDA] because we all want a cure. Especially me. I really want that. But not just for me. Because I know I’m not going to get cured, but for the other boys and girls that are going to come through with muscular dystrophy. I’ve done many trials just to get that cure for research, and that’s exactly what I want. Research is key.

CLIENT SERVICES & PROGRAMS

Our client service team welcomed 41 new clients during 2023, this brings the total number of clients we are working with to almost 1400. People can contact MDA at any stage of their condition for assistance. Our team provide information, support, and programs to meet the needs and wellbeing of our clients.

During 2023, our Client Services team prepared and sent personalised information packs to newly diagnosed clients; and made check-in calls to see what support was needed at regular points. We facilitated and managed the rental of equipment, including Cough Assist machines and provided advice on where to access and hire specialised equipment.

MDA sought feedback from our clients to find out what services and programs they would like MDA to add. A 7.6% response rate was achieved. MDA received a net promoter score of 62, a score of 60 or higher is generally a very good NPS in any industry.

The constructive feedback we received is helping to shape future programs. A survey will be conducted in 2024 and we aim to include a wider range of stakeholders (past, current and future clients) to ensure we address the needs of our community.

Our annual education program for teachers and teachers’ aides was delivered via a series of four webinars during March and April. This education seminar brings together researchers, clinical specialists, healthcare professionals, allied health agencies, family support representatives and carers. All delivered information and their expertise aims to improve the outcomes for those affected by muscular dystrophy in the school environment. The program will return to a to face-to-face seminar in 2024.

A partnership was established with Reclink who deliver sport and recreation programs to disadvantaged Australians to create socially inclusive, life-changing opportunities. Reclink Australia’s programs create pathways to improved health and wellbeing, education, and employment outcomes for all participants. MDA piloted the Reclink Gym & Swim Program with Victorian

clients in 2023. This program provides access to a free gym and swim program.

In October, MDA partnered with Deloitte as part of the Deloitte Impact Day to deliver a webinar to MDA clients. John Younes and Paul BouAntoun from Deloitte presented on tips for employment applications and interviewing for people with Muscular Dystrophy. Their presentation was a highly professional and detailed package, and we were delighted they chose to support MDA.

In November, a new program Wheels and Reels - Fishing with Fid was launched for MDA clients and friends.

Fid [pictured above] has Becker Muscular Dystrophy and

is a volunteer for MDA. With his wife Terri he meets up with MDA clients and shows them how to fish, supplying the fishing rods, tackle, bait and refreshments.

The inaugural event was held at Patterson River for five MDA clients and their families who all had a great time but sadly no fish!

These events are now held monthly at Mornington Pier and the Patterson River, so keep an eye out on our website for details on how to join in. A huge thank you to Fid and Terri for making this program possible.

During the year, coffee catch ups were promoted to our clients. These sessions enable clients to meet with other people who have similar NMD. In addition, they enable MDA to hear what people are doing and what challenges they are facing. This is invaluable feedback that we consider when planning client activities.

MDA celebrated International Day of People with Disability on 7 December with a morning tea and a presentation from guest speaker, Eliza Hull [pictured below]. Eliza is an award-winning musician, writer and disability advocate. She is a proud disabled woman, who lives with Charcot Marie Tooth. A published author, regular speaker and media contributor, she has had her music used in TV and Film and has performed at the Sydney Opera House, The National History Museum in London and The Melbourne Recital Centre.

New Clients

FUNDRAISING ACTIVITIES

A huge thank you to everyone who has fundraised, donated and supported MDA during 2023. We rely on the generosity of our community to deliver our services and fund research.

SuperDads Run For Strength

On Saturday 18 February 2023, a group of 140 dedicated fathers took to the streets of Blackburn a suburb of Melbourne, to raise funds for MDA. Their efforts were incredible raising over $40,000.

The Superdads event was started eleven years ago by a group of Blackburn locals, in support of their friends Brett and Katrina Bugeja, whose son Ben lives with Muscular Dystrophy. Since then, the Superdads have raised over $350,000.

This year, the Superdads were joined by food critic, writer, and broadcaster Matt Preston, who spoke about music, food, sport and style while raising funds for Muscular Dystrophy research and support, which added even more excitement to the event. They walked house-to-house through the streets of Blackburn, sampling beer and cuisines from six different countries, including Italy, Mexico, and Greece.

“Katrina and I are so overwhelmed by the amount of support our sponsors, local businesses, and community gives us. The Superdads walk seems to get bigger and better every year. After not being able to do the walk for three years [due to the pandemic], this one was even more special,” Brett said.

MDA is extremely grateful to the Superdads Committee, our corporate sponsors and everyone who took part for their fundraising efforts and generosity. We extend our heartfelt thanks to the entire team!

The NMD community is truly remarkable. It brings together families, friends, and supporters who offer unwavering support to one another, creating a profound and lasting impact that extends far beyond the present moment. One outstanding initiative that exemplifies this spirit is Run for Strength, initially founded by family and friends affected by muscular dystrophy. Over time, it has evolved into one of our biggest and most celebrated events.

Run for Strength has become a showcase for the incredible achievements a united community can accomplish. People of all ages and abilities enthusiastically joined and engaged in running, walking, and wheeling, as they came together to raise substantial funds for MDA. This collective effort has garnered hundreds of thousands of dollars, which directly contribute to advancing research, support, and hope and services for individuals living with NMD.

Held at Princes Park in Carlton the event was attended by over a thousand people - families, individuals, and corporate teams, who participated in person or virtually across Australia to support the muscular dystrophy community.

Thanks to the amazing people who participated and the generous support of the community, we raised a recordbreaking amount of over $45,000.

To everyone who contributed to Run for Strength – thank you! A special thanks to our community partners and organising committee. It’s truly inspiring to see the huge impact we can make when we all come together.

Superhero Week

In September MDA raised over $30,000 during Superhero Week for crucial research into muscular dystrophy and other neuromuscular conditions.

The Muscle Research team from the Murdoch Children’s Research Institute (MCRI) are the real-life superheroes who investigate neuromuscular disease every day.

In 2023, the team took a stroll down Royal Parade to the MDA office in North Melbourne, raising funds and a few eyebrows!

Superhero Week is always a favourite at MDA HQ as we get the chance to chat one-on-one with the researchers and share our work with each other. It is this spirit of collaboration which MDA serves to foster, creating firm connections between our clients, communities, and the groundbreaking research being conducted right on our doorstep.

Harley Davidson Raffle

MDA’s partnership with Harley Davidson started in 1992 when we ran our first raffle with a Harley bike as the major prize. Now in its 31st year, the raffle raises funds to enable MDA to deliver services to our clients and fund essential research. Thank you to everyone who bought a ticket for our raffle in 2023.

Congratulations to Michael Rumbel won the Harley No. 74 Draw in 2023, with ticket number 000917. Michael is now riding a vivid black Harley-Davidson Nightster Special. Michael is a long-term supporter of the MDA raffle having bought tickets since 2004.

Twice as Nice Cafe

Lorie Norton with his bus, Corazón, has travelled more than 29,000 kms across Australia to raise funds and awareness for muscular dystrophy. The bus serves as a café, gallery, and home, hence Twice as Nice Gallery Cafe. Lorie fundraised more than $13,000 and has made many friends along the way. He’s shared stories about muscular dystrophy with the community and with the media and his story appeared on Studio 10.

Thank you, Lorie, for being such a great advocate and raising awareness of muscular dystrophy in the regions you’ve visited. And, for making great cups of coffee!

Business Awards Gala

The Italian Chamber of Commerce and Industry in Australia (ICCI) chose Muscular Dystrophy Australia as their charity partner for their business awards gala held on 16 September. The event raised over $10,000. The money will go towards advancing the groundbreaking research at MCRI and the Royal Children’s Hospital. We are delighted to become members of the ICCI and look forward to connecting with members. Grazi to everyone at ICCI for your wonderful support and care for our cause.

MDA Founder, Boris Struk with Lord Mayor Sally Capp

Participants at 2023 Run for Strength

CHANTAL’S STORY

Dr Chantal Coles (PhD) is a Senior Research Scientist at Murdoch Children’s Research Institute (MCRI). She has been part of the muscle research team at MCRI for the past 14 years researching muscle diseases, mainly Duchenne, FSHD and Limb-Girdle MD.

MCRI forms part of the Melbourne Children’s Campus (MCC) a unique partnership between The Royal Children’s Hospital, MCRI, and the University of Melbourne’s Department of Paediatrics. The MCC brings excellence in clinical care, research, and leadership together.

MCRI is one of the top three paediatric medical research institutes in the world and MDA is proud to be recognised for our contribution to help accelerate MD research over the last 15 years at MCRI.

Chantal’s research aims to use stem cells from patients to grow them into skeletal muscle cells in culture dishes so we can model their disease. This will enable testing of various drug therapies on the cultured muscle cells in the laboratory before they go to clinical trial.

Chantal is interested in the immune cells that are altered in these NMD, looking at the blood and working with the immunologists at MCRI to work out what those cells are, but also how those altered immune cells can talk to the muscle to repair them because the right immune cells need to kick in to facilitate the repair. She is trying to work out why they’re not repairing and what cells are hindering the muscle repair.

We spoke to Chantal about her research and asked what she loves most about her work. She said,

“Every day is really, really different. Every day I work, I walk into a children’s hospital with world-class surgeons, clinicians, and scientists. And, you know, we’re in the top three research institutes for children around the world, having that is incredible.

“We’re doing really cutting-edge science, so it’s exciting

The Royal Children’s Hospital Neuromuscular Clinic

doing that and we’re doing it right because we’ve got the expertise here, it’s that collaboration - we get to collaborate with, amazing, very clever people as well.

“I love my work, it feels like a hobby to me, and I am always excited to get into work. There can be lows but when we get good results it’s rewarding, you must have resilience – it’s a long-term project”.

We asked her what advice she would give her 18-year-old self and Chantal said,

“It’s the little burning curiosities and passions that don’t go away. When I was 7 for my birthday, I got a microscope and a telescope, so I think that kind of led me to my uni choices - do I do physics or biology? Those passions don’t go away. So, if I could tell myself at 18, like, go back and really reflect on what you love and what you are good at, and I think that would take you to your path.”

Chantal loves the outdoors and spends free time away from the lab with her daughter at the beach, walking the dogs, triathlon training, and hanging out with family & friends.

The Neuromuscular Clinic at The Royal Children’s Hospital (RCH) provides comprehensive care to over 600 children with NMD.

The multidisciplinary clinic is the largest in the hospital and operates as a one-stop shop, allowing access to up to 18 clinicians from different health specialisations during a visit. The clinic prides itself on being family focused and keeps the lived experience of patients at the centre of everything they do. The clinic also runs a research program and participates in numerous clinical trials, which offers patients access to new treatments that are otherwise not accessible. MDA was proud to support their vital work during 2023.

MDA Committee of Management

The activities of Muscular Dystrophy Association Inc are overseen by a volunteer Committee of Management. All members of the Association are eligible to nominate themselves for the Committee, which is responsible for strategic leadership and advice, governance and fiduciary oversight.

ASSOCIATE PROFESSOR

JASON WHITE PhD, President

Jason has over 20 years of experience in research at a number of different universities and institutes. He joined Charles Sturt University (CSU) as Director, Research Office in June 2018. He is a Graduate of Charles Sturt University and the University of Melbourne, being particularly proud of his rich family history at CSU.

Jason has had key project management roles in programs funded by Meat and Livestock Australia and Muscular Dystrophy Australia and has had significant involvement in collaborative projects with the Food Safety Centre within the School of Agricultural Sciences at the University of Tasmania. He currently sits on CSU’s committee of management and has served on NHMRC Grant review Panels.

ROSEMARY MCKENZIE ICDA, Treasurer

Rosemary McKenzie is Founding Director at Melbourne Mortgage Solutions and is a member of the Institute of Community Directors Australia (ICDA).

Rosemary has an extensive background in financial services which spans 30 years’ experience in small, medium and corporate institutions in New Zealand, United Kingdom and Australia. She holds formal qualifications in Public Relations, Marketing, Financial Planning and Mortgage Broking. She is a member of the Mortgage Financial Association of Australasia (MFAA) and is highly regarded as a trusted mortgage broker. In addition to running her own successful business, Rosemary also mentors mortgage brokers entering the industry, imparting her knowledge and expertise to ensure they have a positive and successful experience. Rosemary is heavily involved in her local community as a volunteer and is currently a Board Member of Muscular Dystrophy Australia. She has previously served on the Board of East Keilor Bendigo Community Bank, Caroline Chisholm Society and Try Youth & Community Services. She regularly mentors women in business and enjoys sharing her knowledge to empower others to success.

ANNE ROGERS, Vice President

Anne Rogers is Principal at The Chesapeake Consultancy, which she founded in 2017. Anne is a well-respected and awarded industry leader, who, in 1985, founded Wings Away Travel, after a 12-year career with Ansett Australia.

The Chesapeake Consultancy is a vehicle for Anne to work with others still on their business journey, focusing on succession, planning, execution, and progress coaching.

Throughout her career, Anne has consistently sought wider industry knowledge and involvement, both within Australia and internationally, and has held numerous industry board and committee positions as a result.

Anne enjoys a strong personal brand. She has delivered numerous conference keynote addresses and participated in many panel discussions. She is sought after as a mentor, expert and adviser, and is a member of the judging panel for the National Travel Industry Awards.

Current board positions include Muscular Dystrophy Australia, and the Victoria Police Blue Ribbon Foundation, and a role as a mentor with the Small Business Mentor Service is ongoing.

Anne has a passion for innovation and marketing and also enjoys writing, along with occasional travel commentary on Radio 3AW.

BECOME A MEMBER TODAY

Membership of MDA is open to anyone over the age of 18 years with an interest in NMD. Members may be invited to join our Community Steering Committee which represents the interests of healthcare professionals, clients, carers, and family members.

Community Steering Committee members work to influence debate, advocate for the needs of clients and carers and provide advice and support for MDA campaigns, fundraising initiatives, programs, and services.

An annual membership fee is payable. For details, please contact us at info@mda.org.au

BORIS M STRUK FAICD

Boris is a talented and visionary entrepreneur. Following the devastating diagnosis of his younger son’s with Duchenne Muscular Dystrophy, he pioneered a multi-disciplinary muscular dystrophy research centre and clinic, as well as founding and managing Muscular Dystrophy Australia for over 30 years.

Boris retired from the position of MDA Executive Director in 2019. He remains a committed member of the Board and an Ambassador for our work and has been appointed a Life Member of MDA.

Boris is a subject matter expert on muscular dystrophy with a passion for supporting research efforts into cause, treatments and cures for these conditions. He has expertise in preparing and evaluating submissions to the philanthropic sector, developing real-time software for the NFP applications and is a past Board Member of The Florey Institute.

Chriss Mannix is Managing Director at Soda Communications.

Chriss has more than 18 years’ marketing communications experience both in house and in agency working on some of the biggest and best names in their category.

She thrives on researching and developing plans to tight deadlines in a competitive environment. She has extensive experience across marketing communications including digital marketing, social media, copywriting and platform.

Chriss’ passion is for consumer PR and she enjoys the challenge of creating news and newsworthy platforms. She is experienced in national, trans-Tasman and global campaigns, sponsorship leverage, issues and crisis management, media relations, events and activations, including local and global press events.

With a Bachelor of Arts (Public Relations) from RMIT University, Chriss continues to contribute to the public relations community as a guest lecturer and an on-staff tutor for the RMIT Masters of Advertising course (Globalisation Theory).

ANGELA BONUS [on leave of absence]

Angela forged a highly successful career as Hairdresser, Coach, Business Development Manager, State Manager for one of Australia’s leading Hair and Beauty brands and successful Business Owner before receiving a life-changing medical diagnosis that would reframe her priorities forever.

After being diagnosed with Neutral Lipid Storage Disease with Myopathy - an incurable, progressive and degenerative muscle disease - Angela left her ‘good’ life in search for a more authentic and meaningful life. Drawing from this experience she is now an inspirational speaker, disability advocate and community leader who drives change in people’s attitudes and priorities, highlights resilience and how people with disability and other personal challenges can overcome adversity and offers a grounding perspective that we all need.

Her story is captivating, motivating and at times comically improper.

Angela delves into the uncomfortable truths of denial, identity loss and the highs and lows of rebuilding life after diagnosis –she brings heart-felt honesty to the remarkable road of finding a way back to purpose. Angela generously shared her story with our community as part of the Christmas appeal - thank you.

Malka is a dedicated advocate of Adult Education, Employment Services, Disability Services, Aged Care and supporting new and emerging communities.

As an innovative problem solver, strategic thinker, and collaborator, Malka has achieved project outcomes by developing and empowering teams and enhancing organisational culture.

Malka has over 20 years’ experience in strategic and operational management within the Education, Employment Services, Business, Aged Care, and Disability sectors. As CEO and Corporate Advisor Malka has held numerous leadership roles and informed policy and program design, development and implementation.

Malka has held many voluntary leadership, fundraising, marketing and event management roles in the community.

People and their support networks are what Malka is passionate about and she looks forward to applying her professional skills and experience to facilitate better outcomes and enhance the quality of life for the muscular dystrophy community.

CHRISS MANNIX

MALKA LAWRENCE

THANK YOU

• Tugba Acisu

• Michelle Baker

• Jeremy Bennet

• Angela Bonus

• Brett & Katrina Bugeja

• Daniella Candia

• Terri Cole

• Fid Constantinides

• Stacey Cubitt

• Angus Davidson

• Megan Harris

• Johanna Hayes

• Laura Healy

• Dan Haggerty

• Samantha Haines

• John (Bert) Harrison

• Casey Horner

• Tamara Jenkins

• Mark Jones

• Lily Jones

• John Knee

• Maria Kouppas

• Brooke Lumsden

• Tracey Lowe

• Dylan Marguccio

• Chriss Mannix

• Chantelle McCarthy

• Rosemary McKenzie

• Lorie Norton

A huge thank you to all our community fundraisers, corporate sponsors, partners and volunteers for your amazing efforts and support of MDA during 2023 we could not do our work without your support. This includes:

• Josh Oldershaw

• Matt Preston

• Clara Reiger

• Jenny Roberts

• Anne Rogers

• Peggy Restall

• Chris Richardson

• Toni Seidel

• Greg Smyth

• Debra-Rose Spiteri

• Rebecca Stocks

• Ineke and Boris Struk

• Ashley Tomlin

• Peter Watt

• Prof Jason White

• Mark Wilson

• Jonathon Wright

• Commonwealth Bank of Australia

• Darebin Gas

• Deloitte (John Younes and Paul BouAntoun)

• Deloitte (Rob Mills, Emanuel Damianos, Jesse Horwill)

• Fit for Life

• Hair House

• HUMA - World Expeditions

• Jak Pak

• Lord Mayors Charitable Fund (White Fang fund)

• Macedon Ranges Youth Choir

• Morgan & Wacker Harley Davidson

• Persistence Media

• PLEGA

• Red Road Immersive

• Rotary National Youth Science Forum

• SONY

• Superdad’s Committee

• Trade Tech Services

• The Grangers Foundation

• The Italian Chamber of Commerce & Industry

• The Orchard

During 2023, we received funding from the following Government grant programs.

Australian Government, Department of Social ServicesInformation Linkages and Capacity Building (ILC) program grant.

Victorian Government, Department of Health - Home and Community Care Program for Younger People (HACC) program grant.

It is with deep sadness that we learned of the passing of a number of our clients during 2023.

Jacob Abbott

Blair Anderson

Brendan Aurisch-Webb

Elva Brooke

Christopher Fryer

Jessika Halfpenny

Locky Magnusson

Leisa Mason

Bohe May

Dominic Renye

Judy Spicer Beverley Stidworthy

Ryan Williams

If we have omitted anyone, please contact us so we can update our records and please accept our apologies for the oversight.

Financial Information

Thanks to the generous support of the Australian community, including our donors, sponsors and partners MDA was able to deliver our programs.

We are extremely grateful for the bequest funds received during 2023 in memory of a loved one with NMD. These funds go directly towards servicing the vital needs of our client and patient community, a heartfelt thank you.

Here is a summary of our performance for the year as presented to our Annual General Meeting on 13 May 2024.

FINANCIAL SUMMARY

Money raised for our services in 2023 came from the following sources.

TOTAL INCOME

JANUARY-DECEMBER 2023

National Campaigns and Appeals

Goverment Grants

Client Service Income

Other Income

Community Fundraising

Audit Report

MUSCULAR DYSTROPHY ASSOCIATION INC

ABN: 33 376 893 530

INDEPENDENT AUDITOR'S REPORT

TO THE MEMBERS OF MUSCULAR DYSTROPHY ASSOCIATION INC

Auditor's Responsibilities for the Audit of the Financial Report (Continued)

 Identify and assess the risks of material misstatement of the financial report, whether due to fraud or error, design and perform audit procedures responsive to those risks, and obtain audit evidence that is sufficient and appropriate to provide a basis for our opinion. The risk of not detecting a material misstatement resulting from fraud is higher than for one resulting from error, as fraud may involve collusion, forgery, intentional omissions, misrepresentations, or the override of internal control.

 Obtain an understanding of internal control relevant to the audit in order to design audit procedures that are appropriate in the circumstances, but not for the purpose of expressing an opinion on the effectiveness of the Association’s internal control.

 Evaluate the appropriateness of accounting policies used and the reasonableness of accounting estimates and related disclosures made by the committee

 Conclude on the appropriateness of the committee’ use of the going concern basis of accounting and, based on the audit evidence obtained, whether a material uncertainty exists related to events or conditions that may cast significant doubt on the Association’s ability to continue as a going concern. If we conclude that a material uncertainty exists, we are required to draw attention in our auditor’s report to the related disclosures in the financial report or, if such disclosures are inadequate, to modify our opinion. Our conclusions are based on the audit evidence obtained up to the date of our auditor’s report. However, future events or conditions may cause the Association to cease to continue as a going concern.

 Evaluate the overall presentation, structure and content of the financial report, including the disclosures, and whether the financial report represents the underlying transactions and events in a manner that achieves fair presentation.

We communicate with the committee regarding, among other matters, the planned scope and timing of the audit and significant audit findings, including any significant deficiencies in internal control that we identify during our audit.

K L BYRNE

Partner Melbourne

Date: 29 April 2024

PITCHER PARTNERS