Muscular Dystrophy Australia Year in review 2021
/rɪˈzɪl.jəns/ noun
1. the capacity to recover quickly from difficulties; toughness.
2. the ability of a substance to return to its usual shape.
Message from the CEO
Page 4
Client Services
Page 8
MDA Snapshot Page 6
Living with FSHD Page 14
Fundraising Page 16 Research Page 24
Financial information
Page 28
MDA’s strategic plan Page 30
2021 stood out as being a year of resilience.
Our clients showed strength and resilience in shielding from the pandemic, also its impacts on the ability to access in-person health support and appointments. MDA as an organisation remained agile and resilient and I thank our clients, staff and board members for their efforts.
Thank you for the trust you keep showing us and for allowing us to fulfill your need to connect and interact.
We’re supporting an increasing number of people across Australia diagnosed with one of the more than 60 neuromuscular diseases that fall under the umbrella of muscular dystrophy.
We strengthened our alliances with like minded organisations and together, we shared our concerns about the proposed new NDIS framework including the plan for independent assessments for eligibility to replace the current, specialist-led, process and added our voice for calls to end the unfair legislation that bars access to the NDIS for people over 65. Furthermore, as part of the Neurological Alliance Australia (NAA), MDA has expressed your
concerns about the impact of some of these proposed changes. I will be sharing those developments with you, as soon as possible.
2021 was also the year we joined a global alliance of myotonic dystrophy-focused organisations worldwide to help promote Myotonoic Dystrophy Awareness Day to be observed each September 15th.
Pandemic safety measures including lockdowns in Victoria where we are based, meant we had to hold our main events: Run for Strength and National Superhero Week as virtual events. It was heartwarming to see families and friends all over the country send a powerful and positive message to all people living with muscular dystrophy that they are being heard and supported.
During 2021, I worked closely with leaders of other MD organisations to make the case for change in a number of areas raised by you. For example:
• Calling for consistent newborn screening for Spinal Muscular Atrophy (SMA) in all states and territories following a trial in NSW and ACT. We know early detection, leading to early treatment can make a huge difference to the life of a child with SMA.
• Sharing our clients’ concerns about the proposed independent assessment process to determine eligibility for NDIS support in place of specialist assessments involving neurologists and allied health teams.
• Raising the challenge for people diagnosed with neuromuscular disease after the age of 65, who generally receive less funding and support for independence than people diagnosed at a younger age who are eligible for NDIS packages.
Our thanks in particular to our volunteer Committee of Management, whose leadership and support was invaluable during this past year.
Anne Rogers (President)
Jason White (Vice President)
Rosemary McKenzie (Treasurer)
Dennis Delaney
Chriss Mannix
Boris Struk
And thank you to our staff and volunteers who worked so hard and devoted their time to delivering great outcomes for our clients and their families.
Jan Chisholm CEO
JAN CHISHOLM
It’s a disease that causes progressive weakness and loss of muscle mass.
There are more than 60 different types of muscular dystrophy.
There is currently no cure for any type of muscular dystrophy.
One in 625 adults and children in Australia will at some stage in their lives be diagnosed with a neuromuscular disease.
Muscular dystrophy can start at any age.
Neuromuscular disorders are rare and sometimes the cause is genetic.
• is the one-stop shop for easy access to knowledge, referrals, and information for people affected by muscular dystrophy, anywhere in Australia.
• has support groups including virtual and in-person activities.
• helps people navigate the NDIS and MyAgedCare services.
• has activities and opportunities for people to broaden their horizons and live the life they choose.
• is there for the whole journey with people who are living with a neuromuscular disease
60% of the money we receive comes from our generous donors and fundraising activities.
It goes to support services to all people affected by muscular dystrophy in Australia and MDA funds research into finding better treatments and a cure for muscular dystrophy.
To work towards a world without muscular dystrophy
To provide practical support and hope to the MD community
People can contact MDA for the first time at any stage of their lives with a neuromuscular disease. 39 new clients came to us in 2021, joining the more than 1,000 others to whom we offer information, support and connection. As you can see, our newest clients range from 3 years to 71 years old.
The new clients who joined our community in 2021 are living with the following diseases:
Myopathy Dystrophy
Myasthenia Gravis
Limb-Girdle Muscular Dystrophy (LGMD)
Spino Cerebellar Ataxia
Charcot- Marie-Tooth
Inclusion Body Myositis (IBM)
Emery Dreifuss Dystrophy
Spinal Muscular Atrophy 3 (SMA3)
Our Client Services team is the heartbeat of our organisation and we are proud to have been supporting people with neuromuscular diseases for more than 30 years.
Our main role is to be a national source of: Client support; information; Connection, Education and training that benefit people living with muscular dystrophy and other muscle wasting diseases.
Our client 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.
We are often the first point of call when someone receives their diagnosis and we remain alongside them and their families on their subsequent journeys with neuromuscular disease.
Our team provides information on concessions available, support for participation in the NDIS, clinical trials and recreation as well as connections to relevant local groups and associations depending on your preferences. In summary we are:
The one-stop shop for easy access to knowledge, referrals and information for people anywhere in Australia.
We guide and support our clients navigate the NDIS and MyAgedCare
Facilitating support groups and connections with other people across Australia.
We can help with the transition from pediatric to adult health services, which we know is a crucial time to ensure continuity of care.
But what does that really mean?
It means that in 2021 our Clients Services team provided Advocacy and support and supplied our clients with crucial funding information including eligibility to concessions. We acted as Support Coordinators for clients to get the best of their NDIS packages.
We helped and managed rental of equipment, including: Cough Assist machines and also provided advice on where to access and hire specialised equipment.
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.
In 2021, our team was also busy organising access to MD Net, a peer support program. MD Net allows people with lived experience of a neuromuscular disorder the chance to support someone going through a similar journey some time later. Having someone who
knows how it feels to face life with a neuromuscular disease can be incredibly powerful. MD Net offers practical support from a peer who has, in most cases, been where you are now.
With more than 30 years of experience, MDA has comprehensive referral information for allied health services all over Australia; including: referral to council supports, carer services and other organisations.
When lockdowns eased up in Victoria our team was also busy managing bookings for our two fully wheelchair accessible properties in Phillip Island and Axe Creek, just outside Bendigo. Clients and carers were relieved to be able to enjoy a well-deserved holiday at one of our reasonably priced accessible holiday rental properties.
Bookings and initial enquiries can be made at wheeliesrest.org
Having someone who knows how it feels to face life with a neuromuscular disease can be incredibly powerful.
In 2019 Dan noticed a weakness in his hands. He had no grip and it became difficult to open jars, as his fingers would curl in. A butcher by trade, Dan, initially thought it might be related to his work –perhaps damage from lifting heavy equipment day in and day out.
An unrelated appointment with a medical specialist led to a referral to a neurologist, where Dan was diagnosed with Myotonic Dystrophy
Dan’s relatives made contact with Client Services at Muscular Dystrophy Australia. We called Dan to discuss his options and sent him information. With our help, Dan was able to receive all the support he was entitled to.
We also referred Dan to other organisations, including MD QLD, who could help him. Having a professional person who understood his illness and his situation in the early days was really important for Dan. He was relieved to know that he could call us anytime and with any questions.
We sent Dan a bespoke info pack about his condition. Part of the resource package was a medi-alert card to let people know about his disorder in an emergency.
MDA assisted Dan with the preparation of his NDIS planning meeting, which resulted in making the most of his eligible NDIS package. It included: a carer and equipment, a walking stick and frame, disabled parking, companion card exercise and physio.
MDA’s assistance in those early days was crucial in getting the support Dan needed from NDIS. ‘Having my support coordinator and NDIS package now has made a huge difference,’ said Dan.
‘People at MDA know my illness. What I need, when I need it. They know how things work, which is really helpful. MD QLD came to my NDIS meeting with me. I don’t feel like I’m on my own,’ Dan concluded.
“Organisations like MDA are there for you. Contact them. if you need answers they can help you get them.”
Lockdowns during 2021 meant we were unable to conduct our education sessions face-to-face.
The EducationMD sessions were aimed at teachers, teacher aides and support workers. They were usually held at MDA HQ in North Melbourne.
Presentations have included a wide range of guest speakers from diverse health allied backgrounds, including: neurology, physiotherapy and occupational therapy, genetics, teaching and autism.
We’re looking forward to running our education sessions in person again in 2022.
As well as offering conferences for educators and support staff, we visits schools to advise how to offer a safe, inclusive and responsive environment for pupils with MD. The presentations can be designed for small groups of students who may have a friend with MD, specific class levels, and for the whole school. The presentation can also be designed for teachers only; specific to a year level or for the whole staff of the school.
As a child progresses through the school years, we may visit the school more than once, taking into account staffing changes as the condition has a higher impact on the student’s mobility and welfare. 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.
How FSH MD has changed my life for the betterBy Terry Probert
Born in the middle of last century my life was one big adventure rolling from morning into night. A bag of skin and sinew, always a bit slower, a little weaker and believing my peers considered me less intelligent, made me determined to succeed.
There would be no question as to my career path, I wanted to join the family motor business and become a racing driver. Well, a boy could dream. My heroes were men like Lex Davidson, Jack Brabham, or NASA astronauts.
Never questioning my strength, I found it hard to understand why everyone around me could run further, swim faster and whose hand/eye coordination seemed like it was God given. In essence I considered myself a dork and, if I wanted to get to the Grand Prix circuits in Europe had better be a bloody good mechanic.
Back then, I never understood the effect girls would play in my postpubescence. One kiss from a blonde bombshell at a netball game on a steamy, starlit, summer’s night knocked my boyhood ambitions for six.
The girl, now long gone, woke me to a different set of priorities and for the next thirty-five years I won and lost at business, never having enough time to question my health, or why my stamina failed me when others worked on.
My business world was crumbling during the recession we had to have and I felt as if I had been building sandcastles before an incoming tide. I couldn’t make anything last. However, determination and perspiration are strong allies and our family business held ground until a buyer could be found.
“never questioning my strength, i found it hard to understand why everyone around me could run further, swim faster...”
Moving to Melbourne, I worked in a number of sales positions, which took me across Australia and overseas. In my sixties and considered a fossil by HR folk, I took a job as a parts picker at AGCO, a company selling Massey Ferguson tractors. Considering myself unfit, I didn’t take a lot of notice of the aches and pains, but my right shoulder began drooping even more and occasional numbness traveling to my fingers worried me.
So began a never-ending roster of specialists who, while they thought they could relieve my pain, never offered confidence enough to let them operate. A referral to rheumatologist Dr. Wendy Stevens led to a biopsy and an overnight stay for wine and bickies in St Vincent’s. Luckily, before going to surgery, she thought a second opinion might offer a more accurate diagnosis.
Introducing herself as Dr. Katrina Reardon bustled in. ‘Now look straight ahead and purse your lips,’ she said. ‘Hmm, now whistle?’
Doing my best to imitate a botoxed catfish, a breathless wheeze escaping my pucker.
“Fast forward two years and we were sitting among writers at the 2103 national Literary Awards.”
‘As I thought,’ she said, while casting a knowing eye over my Mr. Men like physique, ‘you can’t pucker your lips.’
‘I’ve had no complaints to date,’ I replied.
My smartarsed comment withered, dying the death it deserved, Katrina asked me to remove my shirt and as I responded to her diagnosis commands, she checked my drooping right shoulder and soft froglike midriff.
Dr. Reardon had been with me only a matter of minutes before offering her suspected diagnosis, FSHD. Recommending the biopsy be sent for genetic testing to confirm her verdict, Katrina explained how my life could change over the next few years and my need to give up working as a furniture delivery man.
At home my wife Ruth and I began sorting out the ramifications of this change to our lives. ‘What are you going to do?’ she asked.
‘Might write a book,’ I said
‘But you don’t read,’ she laughed.
She was right. I didn’t read novels, but being in sales I could tell stories, I just needed to make a yarn last.
Fast forward two years and we were sitting among writers from across Australia at the 2013 National Literary Awards where my debut novel KUNDELA received a Commended.
Since that night Voss, The Price of Innocence and Gillespie’s Gold have also been published. With a growing list of novels, biographies and self-help stories gathering dust on my hard drive while I search for a publisher, I continue to write and learn my craft.
Who would have thought this no longer skinny kid from Orroroo in South Australia, could find his books in many libraries around the country? Not me.
More than 60% of our income comes from fundraising and we simply couldn’t carry out our services and fund research without your support.
Thank you to everyone who fundraised, donated and supported our work in 2021.
So many fundraisers shone and spread joy out in the community. Praise goes to Brett Bugeja and the Super Dads who pivoted and held their annual Super Dads’ Walk with physical distancing restrictions in mind and raised over $25,000.
Mik Wilson, who fundraised and walked for 24hrs straight to raise funds for MDA and Lifeline, raising over $7,000 for MDA.
Many people from our wider community dedicated their birthdays to MDA through Facebook birthday fundraisers.
MDA’s two biggest events, Run for Strength and national Superhero Week, continued to grow despite much of the country enduring lockdowns and travel restrictions.
Run for Strength 2021 was held as a virtual challenge and regardless of lockdowns, proved to be one of our most successful campaigns, raising well over double that of the previous year. Fundraisers all over Australia ran, walked, rolled, skipped and swam more than 5,000km; and raised more than $70,000 for MDA’s services and research.
national Superhero Week 2021 had similar success, thanks to people who were determined to dress up or get out and be active, in any way they could. This event was held in lockdown in Victoria two years in a row, and through NSW and QLD lockdowns in 2021. Our supporters were nothing short of Superheroes for helping us raise just under $60,000! This will directly fund research into muscle wasting diseases.
Thank you to our generous sponsors in 2021: Harvey norman, Myer, Entertainment and Hasbro, who donated some amazing prizes.
thank you to everyone who fundraised, donated and supported our work in 2021.
MIK WILSON AND JAYDEN MACKAY
The top fundraising team for Run for Strength 2021 was team Jack.
Jack lives with Duchenne Muscular Dystrophy.
We caught up with Jack and his team after their event to find out what inspired Jack, his friends and family to take part.
Jack’s family and supporters have participated in Run for Strength since 2010, rain, hail or shine. Thankfully most have been on beautiful sunny autumn days.
In 2010 Jack’s dad, Ashley, and his mates met Ozzie, the founder of Run for Strength and subsequently started helping MDA with the organisation of the day. They’ve been helping the smooth running of the event ever since.
“Although it is the Run for Strength, our family has always walked it. Jack started doing it using an assisted tricycle, then progressed to using a mobility scooter and now cruises around the lake in his electric wheelchair,” said Jack’s mum, Sherrie.
Jack usually has his cousins, Laura and Tyler and mate Declan strolling by his side and it’s always been a morning for them all to catch up
with familiar faces within the MD community, whilst experiencing the real support of all their friends and family through their presence and their donations.
“This year we were overwhelmed by the funds our team raised (more than $8,000) even when they could not all join us for the virtual event and we really want to thank them all,” said Sherrie.
The online support inspired Team Jack 2021 to get out there on the 20th March, “We chose our local track in Eltham where we had walked regularly during Melbourne’s COVID lockdowns. This was a 6km track along the banks of the Yarra and WALL-E, Jack’s Wheelchair, knew
it well. This year he set the fastest pace with his cousin Alice and her new puppy Hugo jogging beside him.
The smaller crowd meant that more of our family dogs accompanied us,” Sherrie said.
“As fun as our virtual Run was, it was done with a much smaller crew (only extended family members) and we will always enjoy the bigger community event, as it reminds us that we are not the only family living with a disease that really needs a cure and the more people who know of it the more support and compassion there is in the world,” Sherrie concluded.
One of the highlights of community fundraising in 2021 was Lindsay Merritt’s busking for Christmas in Warrnambool.
We sent a thank you note to the Warrnambool community, which was published in the Standard on 5 February 2022
Muscular Dystrophy Australia (MDA) staff, including myself, wish to thank the generous Warrnambool community, who since 2015 have been donating to Lindsay Merritt’s pre Christmas busking for MDA. They’ve raised close to $7,000, which is amazing.
We receive very little support from the government and rely on donations. Every dollar raised helps fund research for a cure and assists in providing services to the people living with muscle wasting disorders.
The last couple of years have been challenging for everyone, so we’re even more humbled by the support we have received. Thank you from the bottom of our hearts.
Jan Chisholm, CEO”it’s been a privilege to assist the funding of MDA support services and programs over this time through community enjoyment of Christmas live music on the street”
- Lindsay Merritt
BACK LEFT TO RIGHT: LACHIE, EMILY, BRETT, KATRINA
FRONT LEFT TO RIGHT: BEN, ZAC
The Super Dads’ Walk was created by a group of locals in Blackburn, Victoria, in support of their good friends Brett and Katrina Bugeja, whose son Ben has Duchenne Muscular Dystrophy.
The group has been raising funds for 10 years for Muscular Dystrophy Australia’s services and research.
In 2021, more than 90 members of the Super Dads’ committee and their supporters undertook a socially distanced walk and fundraiser in the streets of Blackburn.
Auctions, sponsorships and fundraising on the day have delivered a fantastic $28,391.
Funds raised support research to trial different interventions with the aim of strengthening muscles impacted by neuromuscular diseases.
We caught up with Ben Bugeja.
Ben, you were 10 when the Super Dads’ Walk started, do you remember when it started?
I vaguely remember in the first year of the Super Dads walk (2012) I was really excited about the day, but also a little nervous. In that first year, I met all of the walkers and had a chat with them at the start of the day when they were all arriving at the school (starting point) to register. Then all the walkers had a big group photo, taken by the Herald Sun, to put it in a Super Dads article in the newspaper the next day. Following this, the Super Dads committee members got me to stand at a certain spot, about 100 metres from where the starting point was for all the walkers to high-five them all as they walked past and that gave me a real buzz and appreciation for what this day/event was about and how much support it had behind it.
I vaguely remember that Super Dads two was very similar. I remember by the third year the committee had me leading all of the walkers out of the school and then as per usual stopping at a certain spot to high five them all as they walked past. In that year they also allowed me to go to the first couple of houses/stops, which got me even more involved with the day.
What are the changes you’ve seen over the years?
More people taking part in the event, as I think the first walk had around 65 people participating and
by the 9th walk they had around 135, even having to stop people from registering late, because it was up to 150 at one stage. There are more sponsors donating, there is more publicity and awareness about the event.
Yes of course, it always is and the closer it gets to the day of the Super Dads’ Walk, the more excited I get. If COVID has subsided a lot by October, I will look forward to the event more than ever, since we haven’t had a normal Super Dads’ Walk since 2020.
How did your friends react to it?
My friends loved the idea and have always said they’d want to do it with me when they turned 18. They have always been very supportive about the event as they know how much it means to me, and I really appreciate them for that.
Now that I am involved in the whole day, my favourite part of the event would be sharing different country themed beer and food at each of the stops/houses with everyone and having a chat with everyone. I love all the camaraderie and exhilaration that comes with the day. I also love how willing everyone is to support and donate to the cause and the awareness and publicity that the event raises.
The day means a lot to me because it shows that our community and the people that go on the walk each year want to make a difference and try to find a cure for muscular dystrophy. I get great joy out of seeing everyone unite for a great cause and I can’t thank them enough for their unwavering generosity over the years, which is why there’s always a great vibe about the day.
Do you see the same people returning each year?
Yes, a lot of the same people return each year, which shows just how much support there is behind the event, and how much everyone enjoys the day. There are around 40 Super Dads who have done every walk since the beginning, which is a fantastic achievement.
Did COviD-19 have much of an impact on the event?
COVID has had a massive impact on the event because the celebratory 10th Super Dads’ Walk in 2021 was postponed to October. As things still weren’t back to normal with COVID by October, the walk was very different to normal in that there was no gathering in big groups. Therefore, instead of coming together at the start of the day at the usual starting point, everyone jumped on Zoom, where the committee members, Jan Chisholm, the CEO from MDA, and I spoke to everyone, they had a slideshow of photos from the last 10 years of the walk and the usual auctioning and raffling of special donated items. Then we had to walk at least 10km with those who lived around our area, and then at the end of the walk or whenever we wanted, share some beers with everyone we were with. Whilst it would’ve been awesome to have all the normal traditions and more to celebrate Super Dads 10, it was still as good as it could be considering the circumstances.
What is your best memory so far?
My best memory of the Super Dads’ Walk so far was in SuperDads 9 in 2020 when I met Doug “Dougy” Hawkins and he presented me with a Footscray Team of the Century Guernsey, featuring all the players names who made the Footscray Team of the Century, with them in their positions on an oval, and signed by Footscray club legends, Hawkins, and Ted Whitten. I had a great chat with him, and he was very funny when he talked to all the Super Dads.
“ the day means a lot to me because it shows that our community and the people that go on the walk each year want to make a difference and try to find a cure for muscular dystrophy. i get great joy out of seeing everyone unite for a great cause.”
In October 2021, Mik Wilson set himself the challenge of walking 24 hours straight and climbing the Pinnacle Grampians in full firefighter gear to raise awareness and funds for Muscular Dystrophy Australia and Lifeline.
Mik is a Firefighter and Cartoonist who is passionate about giving back to the community. This is evident by his career choice and also his dedication to raise funds and awareness for causes dear to his heart. Mik has been working as a Firefighter for 10 years and likes to be challenged with new tasks at each call and the community assistance and support. He told us that being a firefighter can be challenging as firefighters see some pretty horrendous things.
We asked Mik why he chose to support MDA and Lifeline for his annual fundraising.
“Because of my personal connection to Jayden Mackay and my focus on mental health charity and a physical health/ disability charity for my annual fundraising. Traditionally, my focus has been on mental health awareness. I would also commit time, whenever required, to raise funds for my young friend Jayden Mackay, whenever he needed me,” said Mik.
Mik first met Jayden in 2018, when Jayden’s mum Bianca posted on a local community Facebook page
that Jayden needed assistance with a kids book.
“I offered to help with character designs in accordance with Jayden’s ideas. As I came to learn of Jayden’s CMS (Congenital Myasthenia Syndrome) and what he was doing to help others, I couldn’t help but want to see what else I could do to help,” Mik said.
Mik subsequently organised station visits and fundraising for Jayden’s Assistance dog, Lina.
Mik has participated in Run For Strength 2020, 2021 and 2022. And, he keeps supporting Jayden whenever he can.
We’re grateful to Mik for his support and dedication to raising awareness and funds for muscular dystrophy and we look forward to many more years of sharing his fundraising efforts and challenges with our community. Thank you, Mik!
Research today offers hope for better treatments in the short term.
MDA works with talented and world-class researchers committed to conquering rare and often misunderstood diseases. We’re proud of our partnerships to sponsor some of the brightest minds as they seek to build stronger muscles and identify ways to interrupt the disease before it takes hold.
We fund research programs, scholarships and the purchase of important lab equipment. We partner with the Australian Neuromuscular Disease Registry, a nationwide registry of people diagnosed with neuromuscular conditions. The information provided by those on the registry collects important medical
information to improve our understanding of neuromuscular disorders and accelerate the development of new therapies. We ensure our community knows about trials they can participate in.
In recent years, we’ve seen research deliver important new treatments that help people with muscular dystrophy hold on to their quality of life for longer.
MDA is proud to have supported the following recent research projects:
MCRI - In 2018 – 2021 MCRI research has focused on two key areas:
1. Testing novel therapies to decrease inflammation and fibrosis in muscular dystrophy.
2. Creating stem cell models of muscular dystrophy from patients recruited from the Royal Children’s Hospital (RCH) Neurology clinic
Since 2007, MDA has been proudly supporting the Muscle Clinic team at the RCH.
MDA also supports Monash university - The Myopathy Research Team in the School of Biological Sciences which uses zebrafish to study how we can reduce muscle weakness and damage in muscular dystrophy.
“At MDA we keep our focus on research that could be the catalyst for new and better treatments for one or more of the 60 conditions affecting muscle strength. that’s why we invest in research that will deliver breakthroughs in diagnosis and treatment for neuromuscular diseases,”
- Jan Chisholm, CEO, MDA
Our research at the School of Biological Sciences at Monash University uses zebrafish to understand how the immune system impacts muscle damage and weakness in Duchenne Muscular Dystrophy (DMD).
Previous research has shown that the immune system is highly active in DMD muscle. The absence of dystrophin results in repeated bouts of immune cell infiltration or inflammation in the damaged tissue, and ultimately loss of muscle. While this may help stimulate muscle repair, this heightened immune response is also likely to be damaging and accelerate muscle degeneration.
We want to determine:
• Which inflammatory cells contribute to muscle damage?
• Does inflammation act as a barrier to Muscle regeneration?, and
• How can we reduce the harmful effects of inflammation to promote repair of muscle tissue?
The zebrafish has many unique features to help us answer these questions.
Zebrafish models of DMD show severe and progressive muscle degeneration and decreased muscle function.
So far, we have demonstrated that immune system activation occurs in DMD zebrafish and we have identified key inflammatory cell types that are upregulated in the skeletal muscle that may contribute to muscle damage.
We can fluorescently label these immune cells and visually track their movement in the live zebrafish as muscle damage progresses.
We have also developed a suite of assays to assess muscle function during zebrafish development to understand the impact of muscle damage.
We are working on ways to modify the immune response, either pharmacologically or genetically, to improve muscle repair with the ultimate aim of translating our discoveries into improved treatments for DMD.
Who is tamar Sztal?
Dr Tamar Sztal is a geneticist and cell biologist with more than 8 years’ experience developing zebrafish models to understand the causes of muscle disease.
She completed her PhD in Genetics at the University of Melbourne in 2010 where she investigated hormone synthesis and detoxification pathways in insects. Following this she joined the Australian Regenerative Medicine
Institute at Monash University to examine muscle attachment in zebrafish and then moved to the School of Biological Sciences in 2011 to continue her work on modeling muscle disorders.
She has pioneered research to investigate the pathogenesis of neuromuscular disease in zebrafish and set up large-scale screening pipelines to identify treatments that can be rapidly translated to clinic.
“i am incredibly appreciative for the generous support of Muscular Dystrophy Australia who have funded this research. Advancing our knowledge of how the immune system may play a role in Muscular Dystrophy is of utmost importance and i am optimistic that our research will bring us one step closer to identifying a treatment to improve disease outcomes.”
- Dr Tamar Sztal
DR TAMAL SZTAL
Thanks to our generous supporters MDA was able to achieve so much in 2021.
Here in summary is our financial performance for the year as presented to our AGM in May 2022. Our financial reports are audited and prepared by Pitcher Partners and we thank them for their work.
Muscular Dystrophy Australia gratefully acknowledges the support of:
• The Victorian Government
• Commonwealth of Australia Department of Social Service
• The William Angliss Charitable Fund
• The Joe White Bequest
• The Estate of the Late Elizabeth Ann Powell
• Bega Cheese
We sincerely thank our supporters, corporate partners, foundation funders and government agencies for their contributions to our services for people living with neuromuscular diseases. We could not do it without you.
2021
Money raised for our services in 2021 came from the following sources.
Government Grants and Support
Donations and Bequests
Interest and Dividends
e Events and Peer to Peer Fundraising
Working towards a world without Muscular Dystrophy vision
Mission
Role
A
provide practical support and hope to the MD community
Thank you for the cards and updates. It makes a difference
You are a LEGEND thank you so much
You Helped me during my period of crisis
I so appreciate your help and all the information. Please keep in touch with me! What you are doing is amazing! You are the only ones who really care and follow up
I so appreciate your kind words
Thank you MDA for your kindness to mum over the years. Its so nice that people still care and do lovely things like the knitted rug
Thank you for my Knitted rug "It felt Like Christmas"
Looking forward to chatting with you again. Thank you.
You guys blow my mind
reaching out Big hugs to you and your AMAZING team
Thank you for my surpise in the mail. Just Love the Rug
MDA is AMAZING What would we do with you?
Thank you for keeping the communication flow going you are a star You really care for me and my family
I have absolute respect for your organisation and for the love and support you gave to my Mum
