Muscular Dystrophy Australia
Year in review 2019
Muscular Dystrophy Australia is your one-stop-shop for information, support, research, and connection.
From the day of diagnosis, we’re with you for your whole journey of living with a neuromuscular condition.
YEAR IN REVIEW 2019 3 Contents Message from the CEO 4 MDA 5 Corporate Supporters 6 Community Fundraising 8 The Heart of MDA: Our Client Services 16 Our Volunteers, Our Lifeline 22 Our Quest for a Cure 24 Boris M Struk Retirement 28 Financial Information 30
Message from the CEO
2019 marked the start of a new chapter for Muscular Dystrophy Australia with our Founder and Executive Director, Boris M Struk’s retirement after over 30 years at the helm. His legacy endures in a vibrant organisation dedicated to supporting people of all ages living with neuromuscular conditions.
In 1984 Boris and Ineke Struk were told by a neurologist that their youngest son, Ryan, had Duchenne Muscular Dystrophy, one of the severest forms of MD. The devastating diagnosis and lack of support available to the family motivated Boris to start Muscular Dystrophy Australia from a small office in Melbourne.
The goal of MDA from the very beginning still rings true today. That is to provide a voice and a place to turn to for those in the community who live with Muscular Dystrophy and other muscle-wasting conditions.
I’m honoured and proud to have taken over the reins from Boris in July 2019 as CEO. I have spent my entire career working in the not-for-profit sector championing worthy causes, first in my native UK and, for the past 20 years, here in Australia.
My main goal during 2019 has been to develop MDA’s new strategic plan, built by listening to the voices of the Australian Muscular Dystrophy community.
Our vision is to lead Muscular Dystrophy Australia to offer the services, supports and research innovation that you tell us are most important. We look forward to working alongside you, amplifying your voices, and delivering the outcomes you ask of us to provide quality of life today and research breakthroughs tomorrow.
We are also looking forward to forging new partnerships with corporate entities who share our organisation’s values: Inclusive; Caring; Respectful; Brave; Determined.
I take this opportunity to thank the volunteer Committee of Management who oversee our organisation, our clients, supporters and staff for their warm welcome and support.
I look forward to continuing to work alongside you to ensure no-one living with MD or muscle-wasting conditions is left unsupported or without connections.
Thank you for being part of MDA.
Jan Chisholm CEO
MUSCULAR DYSTROPHY AUSTRALIA 4
Muscular Dystrophy Australia (MDA) is the one stop shop for information and support for people living with over 60 neuromuscular conditions.
People can receive a diagnosis of Muscular Dystrophy at any age. They are rare conditions, sometimes, but not always, genetic in cause. To date there is no cure for any form of MD and some conditions are life-limiting or can lead to degenerative disability.
Our vision
To work towards a world without Muscular Dystrophy
MDA services
Our mission
To provide practical support and hope to the MD community
• One-stop shop for easy access to knowledge, referrals, and information for people anywhere in Australia.
• Support groups, connecting with others available to all clients via MDA through virtual and in-person activities.
• Support clients to navigate the NDIS and MyAgedCare via MDA provider services
• Respite activities and opportunities for clients to broaden their horizons and live the life they choose.
MDA Voice
• MDA as the trusted voice for our community.
• Advocacy to government in relation to support and research.
• Supporting our community to overcome barriers to accessibility in everyday life.
MDA Partnerships
• Partnering smartly with others - government, NFP and for-profit providers to ensure the most effective service delivery for our clients.
• Corporate and NFP partnerships allow cost effective service delivery and support services.
YEAR IN REVIEW 2019 5
MDA
Corporate Supporters
Our heartfelt thanks to all the wonderful business partners who have supported our cause over the years. We have been so fortunate to have generous and successful businesses from different industries join us in our efforts. It’s a wonderful show of solidarity and philanthropy that never fails to uplift our community.
AKQA
Since 2016, MDA has been very fortunate to count AKQA as one of our partners in marketing and fundraising activities. AKQA is a world-renowned digital agency that specialises in creating digital services and products.
In 2019 AKQA helped bring our National Superhero Week community fundraising campaign to the Herald Sun’s wide audience, when they developed comic strips for publication that featured people with Muscular Dystrophy, our researchers and Ambassadors.
“AKQA exists to create a better future, through our work and for our clients. We have been so grateful and inspired to partner with MDA, to try and help create a better future for those who suffer from Muscular Dystrophy. We thank MDA for their enduring relationship with AKQA.”
- Daniel Smith, Director - Business Development AKQA
Ferguson Plarre Bakehouses
MDA is lucky to count Ferguson Plarre Bakehouse as a staunch and loyal supporter. Ferguson Plarre Bakehouses, a family owned and operated business, has sponsored MDA’s catering for over two decades for events, including: Trivia Nights and National Superhero Week launches.
MUSCULAR DYSTROPHY AUSTRALIA 6
Lombard The Paper People
For over 45 years, Lombard The Paper People have been a leading supplier of food & drink packaging and disposable catering products for the retail and hospitality industries.
A community and family-oriented business, Lombard Paper, has been supporting MDA for decades.
Red Rooster
Red Rooster has been supporting MDA since 2001. By hosting our collection boxes in numerous stores, Red Rooster teams have raised more than half a million dollars for our services and spread the word about MDA’s work to their staff and customers.
Rubie’s Deerfield Australia
A family owned and operated business for 66 years, with its humble beginnings in New York, Rubie’s offers a wide selection of products for any dress-up occasion. Rubie’s Deerfield is the premium supplier of costumes and accessories to the local Australian and New Zealand markets.
Rubie’s Deerfield donated over thirty thousand superhero capes to MDA. The company has also helped raise funds by offering a special deal to its customers during National Superhero Week where $5 per every Superhero costume sold was donated to MDA.
Telstra
Telstra teams and stores across Australia embraced our National Superhero Week campaign in 2019. Teams dressed up for the day or week and raised funds for our work, while showing Telstra’s customers just how their donations are helping people living with muscle-wasting conditions.
YEAR IN REVIEW 2019 7
THE STAFF AT ORANA MALL TELSTRA SHOP IN DUBBO NSW.
Community Fundraising
MDA simply can’t carry out our services or fund our research without the support of our community. Over 60% of our work is funded thanks to the generosity of community groups, individuals and philanthropists across Australia. Our heartfelt thanks are due to everyone who generously chooses to support our work.
Run for Strength 2019
Run for Strength celebrated its 10-year anniversary in 2019. The inaugural Run for Strength event was the brainchild of Ozi Akyildiz, a father with an affected son, and his friend Sam Quattrone who decided to organise a running event in Melbourne and raise funds for MDA. Since then, the event has gone from strength to strength (no pun intended) and raised hundreds of thousands of dollars for our work.
The superhero themed fun run attracts participants of all ages and abilities, with many members of the MD community taking part. Albert Park is taken over each year by people running, walking, or wheeling around the lake to raise funds for MDA’s services.
Our thanks go to the many volunteers who help run this event on the day. In particular our organising committee of Ashley Tomlin, Mark Wilson and Greg Smyth who so generously give their time and effort to make Run for Strength the success it is. And not forgetting our fabulous MC,Television Presenter, Kristy Mayr, who keeps everyone informed, enthused and entertained on the day.
Run for Strength is a tribute to our community’s resilience, care and support. Thank you all.
MUSCULAR DYSTROPHY AUSTRALIA 8
9 YEAR IN REVIEW 2019 RUN FOR STRENGTH CELEBRATED ITS 10-YEAR ANNIVERSARY IN 2019.
National Superhero Week 2019
National Superhero Week is MDA’s major national fundraising campaign. It is a week-long event in which people across Australia hold an event during the week to raise awareness and funds for Muscular Dystrophy Australia’s programs, services and research. In 2019 over $36,000 was raised for our services.
Heroes of all ages are encouraged to participate during the first week of September. Participants have come from kindergartens and schools, to workplaces and community groups across Australia.
In 2019 the campaign garnered national media coverage when Sunrise on Channel 7 visited a school where a group of friends got together to surprise their very own superhero, Jayden, aged 11 who lives with MD.
Jayden Mackay (year 5) is a student at Montmorency Primary School. Jayden and his family are members of the MDA family.
Jayden lives with Congenital Myasthenia DOK 7: Congenital myasthenic syndrome is a group of conditions characterized by muscle weakness (myasthenia) that worsens with physical exertion. It is a genetic, lifelong and incurable condition.
Like for most MD conditions, there are treatments to help alleviate the symptoms of CMS but there is no cure.
10 MUSCULAR DYSTROPHY AUSTRALIA
SUPERHERO JAYDEN MACKAY WAS SURPRISED BY HIS FRIENDS ON CHANNEL 7.
“It’s a privilege to be able to help raise awareness for superhero week. The young children affected by Muscular Dystrophy and their families are a true example of strength, courage and resilience. All characteristics of superheroes. Dress up as your favourite superhero and donate to MDA so together we can try and make a difference.”
- MDA Ambassador and Carlton AFC player, Levi Casboult
YEAR IN REVIEW 2019 11
MDA AMBASSADOR LEVI CASBOULT WITH SON ARLO.
12 MUSCULAR DYSTROPHY AUSTRALIA
OUR HARLEY DAVIDSON RAFFLE WINNER - DAN FROM YARRAMAN QLD.
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.
The raffle is now in its 34th year and with two draws a year, we’ve sent a few rebels to ride their Harley Fatboy through Australia’s beautiful countryside.
Thank you to everyone who bought a ticket for our raffles in 2019. You are helping keep our services running for people in rural and regional Australia.
Dan of Yarraman QLD won the Harley No 66 Draw in 2019, with Ticket No 1840. Dan has been supporting MDA for many years.
Little Miracles
For most children, making Christmas decorations is a simple, fun activity that’s taken for granted. For thousands of Australian children affected by Muscular Dystrophy, these simple things are a lot harder to do. Muscular Dystrophy may take away your mobility – but not your imagination.
Chloe has a neuromuscular disorder called Spinal Muscular Atrophy (SMA) Type 2, which weakens her muscles, this means she is not able to sit alone, stand or walk.
When she was eight years old, she designed an owl as a Christmas decoration for the family tree. Thanks to clever students at Monash University, Chloe’s owl has been replicated and is adorning Christmas trees all over Australia.
A partnership between young children living with Muscular Dystrophy (MD) and a group of engineers at Monash University resulted in a world-first Christmas campaign – complete with 3D Christmas decorations: Little Miracles.
The once off decorations were made by seven children living with MD and given to the Department of Materials Science and Engineering at Monash who used their state-of-the-art 3D printing technology to scan and print exact replicas of these hand-crafted decorations.
Each decoration –printed using recycled plastic – has a story behind it, unique to the child who made it and captures their experience of a childhood living with Muscular Dystrophy.
YEAR IN REVIEW 2019 13
CHLOE O’NEILL AND HER CHRISTMAS DECORATION.
Super Dads’ walk
“Katrina and I support the MDA as we have a son who was diagnosed with Duchenne when he was two. We felt compelled to do as much as we could to help find a cure. We worked out that the MDA can’t do it alone, and need all the support they can get, to find a cure and support other families with muscular dystrophy. We are determined to leave a positive legacy and hope others will follow suit.” Brett and Katrina Bugeja.
For the last nine years, Brett Bugeja, whose son Ben lives with Muscular Dystrophy, has recruited more than a hundred dads to walk through the streets of Blackburn from house-to-house in the local streets, sampling beer and cuisines from seven different countries including Italy, Mexico and Greece.
The generous dads have raised more than $180,000 in the last nine years.
“The team at Noel Jones had no hesitation in supporting the Bugeja family. From day one and for many years to come we will continue to support the MDA as we believe in our community and the strength and support these events can harness. Awareness is very important and unfortunately you only really wake up when someone close to you is affected.” Rohan Calder, Director.
Laura Healy Ironman Challenge
Laura Healy has been a personal trainer for over 9 years and owns Fit For Life Health & Fitness. Over the years Laura has helped hundreds of clients change their lives through health and fitness.
Laura’s passion for health and fitness stems from her family situation. Her older brothers, Mathew and Robert both live with Muscular Dystrophy.
“I decided I needed to make this Ironman achievement more than just a goal for me to achieve, but also use it as a way to make a difference and raise funds for the exact reason why I’m so driven to take on a big goal like this. Raising money for MDA means that I am still able to give back and help while dedicating so much time and energy to this goal.”
Laura completed the Cairns Ironman on 9th June 2019. An Ironman consists of a 3.8km swim, 180km ride and a 42.2km run. Her goal was to raise $10 per kilometre or $2,260.
Laura raised a total of $5,100.
MUSCULAR DYSTROPHY AUSTRALIA 14
LAURA HEALY.
The Australian Hotels Association
In 2019, The Australian Hotels Association (AHA Vic) presented Muscular Dystrophy Australia with a donation of $10,000 organised by long-time supporter, Michael Robertson.
AHA also supported MDA’s campaign National Superhero Week by promoting the campaign in its glossy, colour magazine Hotel SA to its 5000 plus members across Australia.
Major Bequest to MDA
The late Kevin Hamer made the generous bequest to MDA in memory of brother Ian and Bill who lived with Muscular Dystrophy. His nieces: Georgina, Bethany and Caitlyn, visited MDA HQ to present the bequest, which was invested in helping MDA deliver its programs and services.
An additional bequest from Mr Hamer’s estate was gifted to the Royal Children’s Hospital to support further research into Muscular Dystrophy.
Gifts in Wills can deliver ongoing, transformational impact for our services and research. Please contact our CEO, Jan Chisholm, if you would like to confidentially discuss how you would like your bequest to make a difference for future generations.
YEAR IN REVIEW 2019 15
LEFT TO RIGHT: MICHAEL ROBERTSON, AHA (VIC) COUNCILLOR, BORIS M STRUK MDA ED, DAVID CANNY, AHA (VIC) PRESIDENT AND MARK ROBERTSON, AHA (VIC) VICE-PRESIDENT.
The Heart of MDA: Our Client Services
The MDA Client Services team is the heartbeat of our organisation and offers a wide range of services including Client Support; Information; Quality of Life Programs and Education and Training.
Our client services’ key strength is their expertise in all forms of MD, including the rarest disorders.
“We hear so often from newly diagnosed people and how much they value being able to talk to us. It comes as a relief when we are able to answer all their questions, regardless of how rare their disorder is. We have a rich database of referrals and well-established support groups.”
- Maria Kouppas, Manager, Client Services, MDA
Our team is often the first point of call when someone receives their diagnosis and we remain with you on the subsequent journey for you and your family.
The team is able to provide information on concessions, legislation and travel as well as connecting clients with someone who’s in the same position or has been through a similar situation.
MUSCULAR DYSTROPHY AUSTRALIA 16
School Visits
Our Client services team visits schools with children who live with muscular dystrophy. The presentations are designed for small groups of students who may have a friend with MD, specific class levels, and for the whole school. In some cases, the presentation is for teachers only specific to a year level or for the whole staff. As a child progresses through the school years the team may visit the school more than once, taking into account staffing changes and as the condition has a higher impact on the student’s mobility and welfare. In 2019 we visited 12 schools to support the integration of students with MD into school life.
These presentations are particularly relevant and useful at the beginning of the school year for teachers and classroom support workers, or in the last term before the child progresses to the next level allowing the teachers to plan accordingly.
EducationMD! 2019
MDA hosted EducationMD! to a hundred teachers, teacher aides, support workers and Diploma Personal Care students from the Southern Cross Education Institute. The event was held at MDA HQ, it introduced a wide range of speakers including, Head of Neurology Professor Monique Ryan from The Royal Children’s Hospital, Melbourne, Physiotherapist and Occupational Therapists from the Royal Children’s Hospital, Melbourne and from Genetics Services Victoria, as well as a specialist teacher from the Autistic Support Group working with families whose children live with Muscular Dystrophy.
YEAR IN REVIEW 2019 17
OUR IMPACT ACROSS VICTORIA.
Reaching out
In 2019 our Client Services Team provided the following services:
• Advocacy
• Cough Assist machine rental
• Equipment Information
• Events, outings and respite opportunities
• Funding information including eligibility to concessions, Department of Human Services funding applications, help managing current funding packages
• General client support
• General disorder information and support
• Information and research seminars
• MD Net program - offering peer to peer support for clients
• Monthly newsletter
• Referral information for allied health services, the department, council supports, carer services and other organisations that can help
• Regular client follow-up calls
MUSCULAR DYSTROPHY AUSTRALIA 18
OUR INFO MD SEMINAR.
Our Community
In 2019, MDA welcomed 56 new clients. We offered support to a total of 1,078 clients living with a range of neuromuscular conditions.
The new clients who joined our community in 2019 are living with the following conditions: F I gu RE 1 - CONDITIONS OUR NEW CLIENTS IN 2019 ARE LIVING WITH.
Becker Muscular Dystrophy
Charcot Marie Tooth
Chronic In ammatory Demyelinating Polyneuropathy
Congenital Myopathy
Duchenne Muscular Dystrophy
Facioscapulohumeral Muscular Dystrophy
Inclusion Body Myositis
Limb Girdle Muscular Dystrophy
Myasthenia Gravis
Myopathy
Myositis
Myotonic Dystrophy
Nemaline Myopathy
Charcot-Marie-Tooth (CMT) Seminar
As the longest established muscular dystrophy organisation in Australia we have wonderful, long-standing affiliations, and collaborations with support organisations for particular conditions.
One such collegial relationship was demonstrated in September 2019 when Muscular Dystrophy Australia was proud to support and sponsor the Annual CMT Conference at our HQ in North Melbourne.
YEAR IN REVIEW 2019 19
Oculopharyngeal Muscular Dystrophy Unknown 1 1 1 4 6 5 4 1 1 8 1 1 2 17 3
Jewellery workshops
In 2019 one of MDA’s volunteers, Piere Scott, initiated jewellery workshops for our clients to attend and make their own beautiful jewellery pieces.
The project came about when Piere’s family asked her what she wanted for her birthday.
“There’s nothing I really need but I have a request. I’d like to get together around the kitchen table, and do something, and work towards a common goal. Something that’s not about us. Something that maybe we can make and sell using up-cycled materials and donate the profits to Muscular Dystrophy,” was Piere’s reply.
Subsequently, people heard about Piere’s project and donated boxes of their unused jewellery to upcycle.
“It’s been so amazing. I often find little bags at my front door from people dropping them off when I’m not home. It’s so heart-warming. We rescue and repurpose as much as we can and give them a new life. All earrings have new hardware, so ears are protected and hygienic. To be honest, I love working on this project and find myself getting creative more often than that!” says Piere.
The workshops are an opportunity for clients of MDA to share a morning tea with other clients. Piere guides them into repairing a special costume dress piece they may have bought in with them, as well as using the wonderful array of beads and baubles to make earrings or pendant pieces. The group enjoys a light lunch provided by MDA.
“I’ve thoroughly enjoyed sharing my earring workshops with the MDA members and staff. It’s such good therapy for all involved, including me. There’s something about sitting together with wonderful people and sharing experiences, and working on something tactile and easy, especially when there are no rules! Just enjoy yourself in a supportive environment,” concludes Piere.
MUSCULAR DYSTROPHY AUSTRALIA 20
JEWELLERY WORKSHOPS WERE INITIATED BY MDA VOLUNTEER PIERE SCOTT.
Equipment Library
MDA holds a library of equipment available to rent for people who require short-term loans or who need a piece of equipment for a holiday, visit or trip.
In 2019 we added new equipment to the library in the form of Cough Assist Machines, air mattresses and portable hoists.
The equipment library is made possible through the generous donations of family and the generous support from the Rotary Club Essendon.
The Muscle Clinic at the Royal Children’s Hospital
MDA is proud to support this multidisciplinary clinic at Victoria’s specialist children’s hospital. This multi-disciplinary service brings together relevant medical specialties, allied health therapists and other health professionals. The MDA Client Service team is available there as a resource for families, local doctors, community therapists, teachers and other clinicians who are involved in each child’s care.
The relationship between Muscular Dystrophy Australia and the Royal Children’s Hospital goes back some 26 years and we are proud to be a major supporter of this service, thanks to the generosity of our philanthropic partners.
YEAR IN REVIEW 2019 21
Our Volunteers, Our Lifeline
Volunteers are our lifeline. MDA operates with a small staff team and without the generosity of our volunteers we simply wouldn’t be able to operate as well as we do.
We have been extremely lucky over the years to have attracted the attention and support of highly energetic and passionate members of the community from all walks of life, including: students, allied health workers, business people, and athletes.
MDA has recruited over 5,000 volunteers over the years to run camps and other major activities, including Run for Strength.
“Volunteering expands your skills and experience, increases your employability and is a way to stay active and engaged with the community. It’s also a way for you to give back to the community and help people who need a hand.”
- Jan Chisholm, CEO, MDA
MUSCULAR DYSTROPHY AUSTRALIA 22
23 YEAR IN REVIEW 2019
LEFT TO RIGHT: BORIS M STRUK, BEN BUGEJA, BOB MURPHY AND BRETT BUGEJA.
Our Quest for a Cure
Our community’s hope is that one day a cure is found.
MDA PhD Students
MDA has supported many PhD students adding to the pool of research knowledge in Muscular Dystrophy. This is a fantastic example of what MDA can do with funds raised through events such as National Superhero Week and Run for Strength.
One of MDA’s recent PhD graduates was Adam Piers. Adam’s work looked at ADAMTS5 in Duchenne Muscular Dystrophy (DMD) to show that by ‘genetically silencing’ ADAMTS5, they were able to improve the muscle pathology in DMD patients.
Adam is now working as the Clinical Research Coordinator for Heart Research at the MCRI. In this role, he will be investigating the cardiac pathology of DMD.
Victorian Muscle Network Symposium
MDA participated in the Victorian Muscular Network Symposium; an event sponsored by the Australian Regenerative Medicine Institute (ARMI). This meeting brings together all the muscle researchers throughout Victoria and Australia, including world-class regenerative medicine and muscle stem cell researchers to discuss ongoing research projects and to identify new collaborative opportunities.
MUSCULAR DYSTROPHY AUSTRALIA 24
BORIS M STRUK (THIRD FROM RIGHT) AT THE VICTORIAN MUSCULAR NETWORK SYMPOSIUM.
“MDA boasts a rich and active footprint in not only funding research in muscular dystrophy but also nurturing new generations of researchers.”
- Jan Chisholm, CEO, MDA
YEAR IN REVIEW 2019 25
MDA CEO JAN CHISHOLM VIEWING THE LATEST MUSCLE CELL RESEARCH.
MDA Awards Inaugural Research Fellowship
In 2019, the Murdoch Children’s Research Institute (MCRI) and Muscular Dystrophy Australia established the inaugural MDA Research Fellowship, which was awarded to Dr Chantal Coles.
Dr Coles began her research career in the primary industries, completing a PhD focusing on muscle and fat in developing cows. Her current research focus is creating muscle cells out of stem cells. While these cells are currently 2D, the goal is to develop them into 3D to create an organoid (a ‘mini-organ’). Organoids are valuable tools in medical research, enabling researchers to better study organ development, disease, and potential treatments.
The MDA Fellowship was pivotal in enabling Dr Coles stem cell research “I’m incredibly grateful to be the inaugural MDA Research Fellow, and I hope that my research can lead to meaningful outcomes for families in the future.”
MDA has been a significant and longstanding supporter of MCRI and has funded researcher salaries, scholarships, conference attendance and the purchase of important lab equipment.
“We are extremely grateful for the longstanding and significant support of MDA. Hopefully the establishment of a named fellowship marks the next chapter in our shared journey.”
- Professor John Bateman, Head of MCRI’s Office of Research
MUSCULAR DYSTROPHY AUSTRALIA 26
BORIS M STRUK WITH INAUGURAL MDA RESEARCH FELLOWSHIP RECIPIENT DR CHANTAL COLES.
MDA Supporting Research into muscle wasting diseases
Dr Tamar Sztal, Research fellow in the School of Biological Sciences, Monash University, primarily works on modelling muscle disease in zebrafish by investigating the role of inflammation and taurine treatment on muscle wasting in Duchenne Muscular Dystrophy.
Dr Sztal and her team, including Professor Miranda Grounds and Dr Peter Arthur from the University of Western Australia, have developed methods to quantify both muscle pathology and function as well as a pipeline for largescale drug testing in muscle disease models. This avenue has the potential to provide important biomarkers to assess muscle damage and identify novel treatments that will be rapidly translatable to a clinical setting.
In 2019, MDA funded the recruitment of a PhD student for this project, which was facilitating an expansion of the research that may be part of a larger collaborative network that can be established across Australia.
YEAR IN REVIEW 2019 27
DR TAMAR SZTAL.
Boris M Struk Retirement
After 33 years as founder and inaugural Executive Director of MDA, Boris M Struk, retired in June 2019.
In 1984 Boris was told by a neurologist that his youngest son, Ryan, had Duchenne Muscular Dystrophy, one of the severest forms of muscular dystrophies.
The lack of support available at the time prompted Boris to build upon MDA. A place to turn to for those in the community who have MD, as well as their families.
The ChallengeMD! a series of events established and led by Boris in 2006 and raised more than $2.5 million.
“It’s been an amazing and challenging journey and I never expected to be involved with MDA for more than 30 years! I have been lucky to have had some amazing staff along the years, who have been dedicated and passionate about the cause.”
- Boris M Struk
Life Membership
Pitcher Partners hosted a function to honour Boris M Struk’s contribution to Muscular Dystrophy as founder and recently retired inaugural Executive Director of Muscular Dystrophy Australia during which he was presented with a Life Membership of our organisation.
MUSCULAR DYSTROPHY AUSTRALIA 28
PROFESSOR ANDREW KORNBERG PRESENTED BORIS M STRUK WITH LIFE MEMBERSHIP OF MUSCULAR DYSTROPHY AUSTRALIA.
29 YEAR IN REVIEW 2019
Financial Information
In 2019 MDA took the decision to move our financial year to a calendar year period. Therefore, in order to adjust to the new reporting framework, the 2019 financial year covered an 18-month period covering 1 July 2018 to 31 December 2019.
The financial report for this period, prepared by our auditors Pitcher Partners, was accepted at the association’s AGM held on 6th May 2020.
2,173,823
MUSCULAR DYSTROPHY AUSTRALIA 30
Income Item Amount / $ Donations and bequests 398,188 Raffles 214,756 Events 181,868 Revenue from providing goods or services 23,605 Revenue from government including grants 386,905 Revenue from investments 166,077 All other revenue 77,849 Total revenue 1,449,248 Expenditure Item Amount / $ Employee expenses 774,961 Neuromuscular Clinic and Research grants 533,677 All other expenses involved in the delivery of services to people with neuromuscular conditions
expenses
865,185 Total
F I gu RE 2 - MDA INCOME FOR THE PERIOD COVERING 1 JULY 2018 TO 31 DECEMBER 2019.
Donations and bequests
Ra es
Events
Revenue from providing goods or services
Revenue from government including grants
Revenue from investments
All other revenue
F I gu RE 3 - MDA EXPENDITURE FOR THE PERIOD COVERING 1 JULY 2018 TO 31 DECEMBER 2019.
Employee expenses
Neuromuscular Clinic and Research grants
All other expenses
Muscular Dystrophy Australia would like to thank all our supporters, corporate partners, foundation funders and government agencies for their contribution to our service delivery in 2019.
For a copy of our audited financial report for this period please contact jan.chisholm@mda.org.au.
YEAR IN REVIEW 2019 31
ABN: Tel: Email: Muscular Dystrophy Association Inc 111 Boundary Road North Melbourne VIC 3051 33 376 893 530 03 9320 9555 info@mda.org.au