ANNUAL REPORT 2018/19 CONTENTS. OUR PEOPLE. OUR PEOPLE 3 FIGHTMND BOARD CHAIRMAN’S REPORT 4 CEO’S REPORT 6 REMEMBERING DR. IAN DAVIS 8 Bill Guest Pat Cunningham Neale Daniher Chairman Vice Chairman Patron 2018/19 RESEARCH PROJECTS 10 CAMPAIGNS & FUNDRAISING 16 FINANCIAL REPORT 20

Gary Nugent Dr. Trevor Chong Dr. Judith Slocombe OUR PARTNERS 22 Treasurer

Lewis Martin Andrew Dillon Mark Evans

FIGHTMND STAFF

Jamie Howden CEO Bec Daniher Campaign Director Dr. Bec Sheean Research Director Katrina Parker Fundraising Director Adam Kinross Finance and Operations Director Andrew Holmes Communications Manager Anna Skelton Fundraising Manager Georgia Cornell Social Media and Campaigns Coordinator Lauren McKellar Campaigns Coordinator Dr. Davor Stanic Research Coordinator Magdalena Ojeda Database Coordinator 3 CHAIRMAN’S REPORT.

AS I REFLECT ON THE FINANCIAL There are always extraordinary highlights to YEAR OF 2018/19, I DO SO WITH GREAT savour from every Big Freeze event at the MCG ANTICIPATION AND EXCITEMENT on the Queen’s Birthday, and in 2019, an array ABOUT WHAT LIES AHEAD FOR THE of ex-AFL champions and Australian female GLOBAL FIGHT AGAINST MOTOR sporting royalty led the charge for us. The celebrities that we approach to be involved in NEURONE DISEASE IN THE IMMEDIATE this amazing event always accept the invitation FUTURE, AND BEYOND, GIVEN THE and immerse themselves in the spirit of the event FOUNDATION’S FUNDRAISING with incredible enthusiasm and fun. SUCCESS, AND SUBSEQUENT MND RESEARCH FUNDING. To the 14 sliders in 2019, you are thanked from the bottom on our hearts. Without your Despite the joy of that success, there was a pall unconditional cooperation and support, we could of sadness that was experienced by everyone at not achieve what we have with this now iconic FightMND, and our supporting ‘Army’, with the event on the Australian calendar. terribly sad passing of a dear friend, inaugural Chairman and the visionary behind FightMND, The Big Freeze 5 extravaganza was a Dr. Ian Davis, in November 2018. resounding success with a total of $5.4 million raised during the campaign, which was greatly Ian was an inspiration to everyone who knew assisted by the generous contribution by the him, and he played an immeasurable role in Federal Government once again. establishing FightMND, and the progress made in clinical research into finding effective Both the Morrison Federal Government and treatments and a cure for the insidious disease the Victorian State Government have been that is Motor Neurone Disease. wonderful supporters to our Foundation over many years and have contributed significantly The courage and selflessness he displayed to our cause, allowing us to invest vital funds during his own personal fight against the to world-leading research. On behalf of the disease he fought so hard to eradicate for future Board, I personally thank the Hon. Greg Hunt, generations will be remembered by people Federal Minister for Health, the Hon. Josh To my fellow FightMND Board Members, many Finally, I wish to extend my thanks to Neale around the world affected by ‘The Beast’ as a Fydenberg, Treasurer of Australia and the Hon. thanks to you all for your individual and collective Daniher who, through immense personal true mark of the man he was. Daniel Andrews, Premier of Victoria, for their contributions to our strong governance. It is vital difficulty, has continued to play a vital role as the commitment to FightMND and the quest to find a that we remain a respected and agile Foundation face and voice for the cause. Neale continues to We are thankful to have had the privilege of cure for ‘The Beast’. and a leader in funding the best MND research put the fight against MND and our organisation having Ian positively impact our lives, and the worldwide that we can. first, supported by his loving family, and for that lives of all affected by MND, and he will be To the wonderful and committed staff of our we are eternally grateful. fondly remembered. We extend our love and Foundation, led by our CEO Jamie Howden, I thank all our donors, large and small, for support to Ian’s wife Mel, and son Archie, who I thank you all. Our small but passionate team your extraordinary contribution. The Australian Regards, will forever remain part of the FightMND family. in the office contribute countless hours of community’s financial support allows to fund the Rest in Peace Ian. extraordinary work to deliver several successful best research projects available and continue to campaigns and community fundraising events progress to our end goal of finding a cure for the 2018/19 was an extremely positive period for that enable FightMND to fund major MND disease that an average of two Australians die FightMND with the fifth annual instalment of research projects both domestically and from each day. Bill Guest the iconic Big Freeze at the ‘G and the fourth internationally. I am extremely proud of our team Chairman edition of Daniher’s Drive, highlighting our major and thank them for all they do. campaigns and yielding the best fundraising results for those two events since our inception in 2015. 5 CEO’S REPORT.

Since our inception in 2014, FightMND has So while we can’t celebrate reaching our AS CEO OF FIGHTMND, I HAVE LEARNT invested $28.8M into MND research and ultimate goal at the present time, we can A GREAT DEAL ABOUT THE POWER $2.45M into purchasing vital care equipment celebrate where we have come from as a OF PEOPLE AND WHAT I HAVE LEARNT to assist with care of MND sufferers around Foundation and what progress has been made in ENTHUSES ME ABOUT THE FUTURE Australia. OF COMBATTING MOTOR NEURONE the research sector in the past five years. DISEASE. In the 2018/19 year, FightMND proudly We believe that more effective treatments of committed $7.6 million to the best and brightest MND will be available to MND patients within the Based on the work that our great organisation researchers in Australia and internationally next five years and that the global momentum of does, supported by our amazing FightMND so the brilliant work they do can continue. MND research is currently at its greatest. Army, I believe that the power of our people is We understand the fight will be long, and the making significant inroads in the fight against research will have its highs and lows but we The prospect of effective treatments and the ‘The Beast’. know we are in the fight and landing some global momentum is testament to the level of punches now. There is real momentum and that funds raised by our supporters, and where these We know that FightMND was initially established needs to be maintained so we continue to need funds have strategically and rigorously been and currently exists to fund world-leading, the support of the FightMND Army. directed – straight into the hands of world- cutting edge medical MND research to discover leading researchers and MND laboratories effective treatments and ultimately a cure for At FightMND, we say ‘It Takes People’ and throughout Australia and internationally. Our Motor Neurone Disease. the past year illustrated that once again. We loyal FightMND Army can feel justifiably proud of know that MND takes people. It takes people’s having played a significant role in that. We also know that the above has not been ability to move, to speak, to eat, to swallow and achieved – yet. ultimately to breath.

It also takes people to fight it. It takes people to rally to the cause, to fundraise, to volunteer, to With the expertise of the best and brightest care and therefore to play a role in the overall researchers around the world supporting our fight against MND. We are privileged to have fundraising efforts, we are progressing towards ‘our’ people and we value them. our goal but we are not there yet. We must continue to fight the fight. We know you will I would like to thank the Board of Directors continue to support us, support those families of FightMND for their continued support living with MND and help those diagnosed in the and guidance and our hard-working team at future. FightMND. Strong governance is one of our key strategic pillars and our Foundation is fortunate We are in this together. to have an extremely invested and highly committed Board guiding us into the future. Regards,

I acknowledge and thank the staff of FightMND who commit tireless and valuable hours to deliver the many facets of our operations, from fundraising to communications to finance and Jamie Howden research. I thank you for the work you all do CEO to ensure FightMND remains a leader in MND fundraising and research with the ultimate goal of living in a world without MND.

7 REMEMBERING DR. IAN DAVIS.

ON NOVEMBER 1, 2018, FIGHTMND Over time, Ian’s MND progressed to a point Ian has left several indelible legacies, but two CO-FOUNDER DR. IAN DAVIS LOST HIS where he was unable to come into the office very stand out above all others. The establishment of COURAGEOUS BATTLE WITH MOTOR much. We would chat over skype or over email, the Foundation and his family, beautiful wife Mel NEURONE DISEASE. FIGHTMND so it was a little challenging in the beginning. and adorable son Archie. RESEARCH DIRECTOR, DR. BEC Then we were in constant communication all day everyday it seemed about what we were going to We could just be a fundraising organisation, but SHEEAN SHARES HER MEMORIES OF work towards but we were always making sure we are so much more than that and are now WORKING WITH IAN, HIS IMPACT ON we were having a lot of fun at the same time. having a real impact in the research sector. That GLOBAL MND RESEARCH AND THEIR is difficult to do when dealing with a disease like FRIENDSHIP THAT ENSUED. The best days were the days he was able to MND that is so hard to make progress on and come into the office. We spent hours talking have an impact, but we are. I first met Ian in 2014 when he came to visit about where we wanted to go in the future and our MND lab at the Florey Institute where I was what opportunities were out there. His vision The concept, and ultimate successful delivery, of working. He came to meet Brad Turner, who was enabled him to go above and beyond what I ever the Australasian MND Symposium in Melbourne our lab head, to see the work we were doing. thought was possible. in 2018 will always be something we’ll thank Ian for. We reached out to a dozen MND experts Ian had a vested interest in our work - he had When I am asked about the impact Ian made, it internationally and we were hoping to get MND. is a difficult question to answer. His impact was three or four of those people agree to come multi-faceted. and speak, but because of the person Ian was The things I really remember about Ian, aside and his reputation, we had 10 international from being very tall, was that he was really I honestly think Ian has single-handedly changed speakers want to come and be part the inaugural friendly and an incredibly optimistic person. the way the rest of the world looks at Australia symposium. for MND research. From the first conversation you had with Ian, you Thank goodness he didn’t take no for an answer The event was incredible successful and ended just immediately liked him. I certainly did. otherwise FightMND wouldn’t be where it is The type of research we fund, and the models up being something the Foundation should be Before meeting Ian, I didn’t know much about today nor would the progression of global MND we use to determine the best and most suitable very proud of and can be attributed to the hard him. All I knew about him was he had MND and research. research to fund can be, in the most part, work of Ian. was trying to raise money and make a difference attributable to Ian. in the MND fundraising space. To illustrate how much Ian immersed himself I know he died with the knowledge he made a into the Foundation and the cause when it was These are elements of our Foundation that other big difference. We are in a better place now than History will show that Ian indeed did make a founded, he did almost everything from day one. organisations are now looking at and thinking it before Ian Davis. That is a great legacy. difference, in more ways than he could have ever I decided to do some fundraising for FightMND is a really good way of doing things. Ian helped imagined. and when I first made contact to say I wanted to set a standard in MND research in Australia. Ian always taught me to make a decision and to fundraise, it was actually Ian that responded go for it. He lived his life like that, and I suppose People often ask me how would I describe Ian. to my inquiry. That really surprised me because Having clinical trials available for MND sufferers having MND makes you not want to waste time. That’s easy. He was driven, confident with a I assumed there was a lot of people working at was a high priority for Ian because they give strong vision and knew how to get things done. the Foundation and someone in admin might people hope. I hear his little voice in my head often and that He could be very headstrong when he wanted respond to me. inspires me to continue to make a difference, like something, which was a really positive thing. Ian’s vision was that for those diagnosed, they he wanted to do. He was a great leader, a great In the early days, Ian did everything from have an opportunity to be involved in a trial as mentor and the those around the world impacted He knew how to get people to join the cause designing the logo to setting up the website, opposed to going to their neurologist and being by MND will miss him. with him. He led from the front. ordering the merchandise to then thinking about told there is nothing that can be done for them. research and fundraising strategies. He worked 24/7. Even though he was the one Dr. Bec Sheean Being headstrong and backing himself, Ian with MND and losing the use of his hands, I FightMND Research Director ruffled a few feathers when he came into the Along with his wife Mel and son Archie, couldn’t keep up with the rate at which he was MND sector. He just believed that what he was FightMND became his purpose in life. He was processing information, coming up with new doing was right, and he wouldn’t take no for an determined to make an impact. ideas and new contacts. answer. He was so committed. 9 FIGHTMND FUNDED RESEARCH SUMMARY.

2018 FIGHTMND FUNDED RESEARCH 2. PHASE 2 CLINICAL TRIAL OF 3. PHASE I TRIAL OF CUATSM ORAL SUSPENSION MEPHA4-FC IN MND PATIENTS In 2018 FightMND has committed another $7.6 million into MND research. Projects were assessed by a panel of independent MND experts, both national and international who reviewed the research grant Background Background applications before making recommendations on which research projects should be selected for funding. The development of copper(II)ATSM (CuATSM) as a The molecule EphA4 plays an essential role in They include; treatment option for MND started around 15 years ago both the formation and function of the locomotor when it and related compounds were tested in animal system where nerve cells connect with muscles » Phase III clinical trial of TW001 (Oral Edaravone) models of neurodegenerative disease. Over the years, to control movements. Work from Prof Bartlett’s » Phase II clinical trial of Copper(II)ATSM the laboratory-based evidences supportive of CuATSM laboratory has shown that blocking EphA4 » Phase I clinical trial of mEphA4-Fc being an effective treatment accumulated to the extent with a drug called mEphA4-Fc improved » 2 Drug Development Projects + LAUR-301 + GRT-X where clinical testing in MND patients became a functional performance and life span in an » National Precision Medicine Program for MND legitimate possibility. MND mouse model by preventing the death of » Biomarker Facility at Flinders University, South Australia motor neurons. Researchers propose the drug In 2016, FightMND helped to support the phase I mEphA4-Fc may be able to slow disease and FightMND are proud of the strong governance and rigorous processes and procedures it undertakes to clinical trial where CuATSM was given to MND patients protect motor neurons in MND patients. ensure the best projects are funded. as a therapeutic for the first time. Results from the phase I trial indicated that CuATSM was safe and well In 2017, FightMND awarded Prof Perry tolerated in MND patients and a dose was identified Bartlett’s team a grant to prepare this new that would be used in the next phase of testing. compound for testing in a phase I trial. This PHASE CLINICAL TRIALS project included scaling up the manufacturing of The Project: Phase II CuATSM trial mEphA4-Fc, quality control to ensure the drug In 2018, FightMND funded 3 new clinical trials; one Phase III trial, one Phase II and a Phase I. This phase II study is being run by the company is high-quality and suitable for clinical testing Collaborative Medicinal Development and will test an as well as safety and toxicology studies and 1. PHASE III CLINICAL TRIAL OF is very taxing for patients and who need to oral suspension of CuATSM in MND patients in both mEphA4-Fc is now ready for testing in a phase TW001 (AN ORAL FORMULATION visit clinics/hospitals on treatment days and for Australia. This study will be larger than the phase I I trial. OF EDARAVONE) doctors/nurses who need to administer the drug. study and has been designed as a placebo-controlled trial where both participants and doctors will be The Project: Phase I mEphA4-Fc trial The Project: Phase III TW001 trial blinded to whether the participant is in the placebo This project, led by Prof Perry Bartlett at the Background In 2015, Treeway, a biotechnology company in the or drug group. These factors, plus a number of other Queensland Brain Institute, is a phase I safety The drug, edaravone is a free radical scavenger Netherlands, demonstrated in clinical trials that important aspects of the study design are vital when trial that will examine the safety and tolerability that targets oxidative stress, a process known adequate levels of edaravone can be obtained in investigating the efficacy of a new drug. Outcomes of mEphA4-Fc in MND patients. This study is to play an important role in the pathogenesis of the blood by oral administration of edaravone. At from this phase II trial will confirm that CuATSM can the first time that mEphA4-Fc will be tested in MND. Analysis from clinical trials of edaravone Treeway, orally administered edaravone is referred be safely administered to MND patients and provide humans. The study is expected to begin in the have shown that it slows disease progression in to as TW001. Treeway is developing Edaravone evidence of the efficacy of CuATSM in slowing disease middle of 2019 and be completed in late 2021. a sub-group of patients who have been recently as a formulation so patients can take it via the progression. Positive outcomes from this trial will support diagnosed and have lesser disability [for more mouth (oral) each day as a sustained delivery mEphA4-Fc to be progressed through to the info]. In 2015, the intravenous formulation of medicine. Principal & Coordinating Investigator: Dominic next phase of testing. edaravone, known as Radicut®, was approved in Rowe, AM (Faculty of Medicine & Health Sciences Japan for the treatment of MND and in the USA it The clinical trial of TW001 is a large international Macquarie University) Lead Researcher - Prof Perry Bartlett was approved under the name Radicava® in May phase III trial, with FightMND funding the Australia 3 Sites: Dominic Rowe, MD, Macquarie University Affiliations: Foundation Professor in Molecular 2017. Currently, it is not approved in Australia. component. The trial will commence towards the (Sydney NSW); Neuroscience, The Queensland Brain Institute, end of 2019. Susan Mathers, MD, Calvary Healthcare Bethlehem University of Queensland Radicut® and Radicava® are administered (Melbourne VIC); Expected outcome: A successful outcome intravenously (like an intravenous drip) and the Principal & Coordinating Investigators: TBD Robert Henderson, MD, Royal Brisbane and will support the testing of this therapy in dosing regimen consists of 10 days of treatment, Global trial with Australian sites Women’s Hospital. a Phase 2 Clinical trial in 2021/2022. over a period of two weeks, followed by a 16-day Number of Subjects: Australian cohort likely 60 Potential fourth site in WA. drug holiday, a period in which the patient is not patients from 5-6 sites Number of Subjects: 80 subjects will be randomized given edaravone. This method of administration 1:1 (40 Cu(II)ATSM: 40 placebo) 11 FUNDED RESEARCH SUMMARY (CONT.).

DRUG DEVELOPMENT PROJECTS TRG 2. INVESTIGATING THE This project involves a vital collaboration between: THERAPEUTIC POTENTIAL OF » MND patients and clinics » the Centre for Eye Research (CERA) led by In 2018 FightMND funded 2 pre-clinical Drug Development projects. These were selected through our GRT-X IN HUMAN AND MOUSE Associate Professor Alice Pebay Translational Research Grant (TRG) Scheme. MODELS OF MND » the Australian MND Registry (AMNDR) led by Associate Professor Paul Talman TRG 1. V-SMART® One of the other key benefits of this project is Background » the Sporadic ALS Australia Systems NANOMEDICINE FOR THE that the V-Smart® Nanovesicle technology can This project brings together 3 academic Genomics Consortium (SALSA-SGC) led by TREATMENT OF ALS/MND be utilized to deliver other non-brain penetrating researchers with differing but internationally Professor Naomi Wray, and therapeutic agents into the brain and spinal cord acclaimed expertise in MND and a pharmaceutical (LAUR-301) » the FightMND Drug Screening Program at the to target the motor neurons in MND. company with a unique a promising drug, GRT-X. Florey Institute of Neuroscience and Mental

Background Health led by Associate Professor Brad Lead Researcher - Prof Eliahu Heldman GRT-X is a promising therapeutic as it acts Turner GDNF is a protein that supports the health of Affiliations: Director of Biology, Lauren simultaneously on two neuroprotective neurons and has been shown to protect dying Sciences LLC and Professor Emeritus, Ben- mechanisms that can reduce the rate of motor The Project workflow motor neurons in MND mice. However, GDNF Gurion University, Israel neurone loss, which will hopefully slow the does not have good drug-like properties for MND patient and control subject blood will Expected outcome: This project is expected to progression of the disease. GRT-X has been be collected for genomic analysis by SALSA‐ treating MND as it cannot penetrate the brain and demonstrate true bench-to-bedside applicability shown to reduce hyperexcitability, commonly seen reach its target cell, the diseased motor neurons. SGC. Skin cells will also be collected and within 24-36 months after completion. in MND motor neurons, and reduces inflammation reprogrammed into stem cells which are and inflammatory pathways. Lauren Sciences LLC, a private New York differentiated into motor neurons in the dish. MND biotechnology company, has developed an and healthy control motor neurons will be profiled The Project: Pre-clinical testing of GRT-X using genetic, protein and metabolism approaches innovative nanovesicle platform technology, in human and mouse models of MND called V-Smart®, to encapsulate and deliver to construct disease pathways and networks. This project will test the ability of this new drug Genetic, molecular and clinical data obtained from non-brain penetrant molecules across the blood- GRT-X, to slow MND disease progression in MND brain-barrier (BBB), target sites in the brain and AMNDR will be integrated using systems biology mice. It will also investigate how the drug is having and big data analysis. Disease signatures will be selectively release molecules at these target sites. protective effects on motor neurons and determine Importantly, V-Smart® nanomedicines developed generated and used to subtype MND patients if GRT-X is a good drug to be advanced into the according to genetic, molecular and clinical with this technology can be administered non- clinic. invasively. profiles. Patient motor neurons will then be subject to targeted and personalised drug screening Lead Researcher – Associate Professor Mark Lauren Sciences has shown that their V-Smart® guided by disease signatures and subtypes, in an Bellingham effort to advance drug candidates to clinical trials Nanomedicine LAUR-301: encapsulates GDNF, Affiliations: University of QLD maintains GDNF activity, targets cells, delivers in MND patients. Expected outcome: This project will determine and selectively releases dose-dependent amounts if GRT-X should be further developed for testing in of GDNF in the central nervous system (CNS, MND patients. i.e., brain and spinal cord) of normal mice, without Expected outcome: This project will lead to toxicity. a better understanding of the Australian MND population and improved recruitment of patients The Project: Pre-clinical testing of NATIONAL PRECISION into clinical trials: the right drug for the right LAUR-301 in MND mice MEDICINE PROGRAM patient at the right time. The researchers will now test whether LAUR- This project is supported by the Australian 301 can deliver GDNF in MND mice, protect This is a large scale national collaborative project Government through the Medical Research dying motor neurons, reverse or slow down that aims to accurately classify/group MND Future Fund. progression of MND disease and increase patients according to their genetic, molecular and lifespan. Successful results from this project will clinical profiles using innovative stem cell models lead directly to future development of LAUR-301 and systems biology approaches to predict and to be progressed towards a phase I clinical trials. tailor treatment options for each individual patient. 13 FUNDED RESEARCH SUMMARY (CONT.).

MND BIOMARKER FACILITY

FightMND provided the funding for the purchase of cutting-edge robotics to fast-track the assessment of MND biomarkers in patient samples from both Australian and international Clinical Trials. Biomarkers help to track disease progression and aid in the development of therapies by providing a read out of whether or not the therapy is effective. Flinders University has developed a world-first urine test (biomarker) that can reliably be used to determine MND disease progression.

Expected outcome: This will establish a high-through screening facility to assess MND patients’ response to new therapeutics.

FIGHTMND DRUG DEVELOPMENTDRUG DEVELOPMENT PIPELINE PIPELINE

DISCOVERY RESEARCH DRUG DEVELOPMENT CLINICAL TRIALS APPROVAL THERAPEUTIC CANDIDATE TARGET OPTIMISATION SAFETY & PHASE 1 PHASE 2 PHASE 3 PHASE 4 TGA APPROVAL IDENTIFICATION MANUFACTURING

TW001-Oral Edaravone CuATSM

Tecfidera

Triumeq

IC14-mAb

PMX205

mEphA4-Fc

CuATSM + Ferroptosis inhibitors

GBA inhibitors

Neuropeptide Y

MIPS19048 (Rab 1)

PDI mimic

GRT-X

LAUR-301

- Current FightMND funded projects

The Drug Development Pipeline showing therapeutic candidates supported through FightMND funding. Green arrows represent currently funded projects in 2018.

15 CAMPAIGNS & FUNDRAISING.

BIG FREEZE 5 2019 SLIDERS DANIHER’S DRIVE SOCKIT2MND JUNE 10, 2019 OCTOBER 11 - 14, 2018 JUNE 15 & 16, 2019 Liam Picken The fifth edition of the famous Big Freeze at the Anna Meares Sam Mitchell The fourth edition of Daniher’s Drive, which raised an The second Sockit2MND round in MCG on June 10 again went to new heights incredible $2.6M began in Melbourne and ventured 2019 yielded our most successful in 2019 with a record number of Big Freeze Bob Murphy Cyril Rioli across the border to South Australia for the first time in year yet, with a significant rise in beanies sold throughout the campaign. Brendan Fevola 2018. participation and sock purchases Jobe Watson from previous the inaugural year in The six-week fundraising campaign raised $5M Bianca Chatfield Lauren Jackson With the magnificent sunrise backdrop of Government 2018. and we have the Australian public, the Federal House in Melbourne, the convoy of 106 cars and 366 Government and our campaign partners to participants set off for the annual four-day journey that thank for achieving this outcome. visits regional townships of Australia amid some the country’s most magnificent landscapes. The Australian community once again rallied behind us as they have for the past four years The 2018 event included community and lunch stops in and supported the campaign like never before Woodend, Daylesford, Stawell, Nhill, Apsley, Penola, donating so incredibly generously to help the Coleraine & Dunkeld throughout each day before settling fight to beat Motor Neurone Disease. in each night at Horsham, Mount Gambier (SA) and Geelong on nights one, two and three respectively. Donations rolled in and beanies were bought throughout the campaign but as the campaign Night two featured a Gala Auction and Comedy night with The SockIt2MND round is a reached its crescendo, all eyes, as always, entertainment provided by two of our great comics, Tom fundraising round for grassroots were on the Melbourne Cricket Ground on June Gleeson and Cal Wilson before a Woodstock themed and community sporting clubs to 10 for the fifth Big Freeze at the MCG. fancy-dress night concluded the event on the final night. join the fight against MND. The round aims to generate awareness The Big Freeze in 2018, when all 18 AFL The Australian community continue to support us in vast of MND throughout sporting club coaches slid into Australia’s coldest pool was numbers and the Daniher’s Drive presents an opportunity and association communities by always going to be a hard act to follow but for FightMND to go to the regional communities of wearing blue FightMND socks in 12 months later, the event delivered its usual Australia and thank them for the support they provide. the dedicated SockIt2MND round. brilliant entertainment factor again. In 2019, the campaign raised Fourteen sliders, including past AFL champions $223,710, a 41% increase on the and sporting legends, were invited by Neale year prior with 14,000 pairs sold Daniher to take the plunge into Australia’s most compared with 9,500 in 2018. famous ‘ice bath’. A record number of 234 clubs and AFL games record-holder Brent Harvey joined associations purchased socks in members of the AFL 300-game club, Brownlow 2019 with 196 of those coming medallists and premiership players and gold from Victoria including 10 clubs medalists in netball, cycling and basketball at from the VFL competition. For the the top of the, and bottom, of the Big Freeze first time in 2019, we received slide. wonderful support from the South Australian National Football Big Freeze 5 was watched by over 700,000 League (SANFL) with four clubs people live through Channel 7 wearing socks in two league matches. 17 CAMPAIGNS & FUNDRAISING (CONT.).

COMMUNITY FUNDRAISING COMMUNITY FUN RUN EVENTS BIG FREEZE EVENTS FightMND’s participation in several fun run At FightMND, we are extremely proud of what events also proved extremely successful the Big Freeze at the MCG has grown from fundraising activities. since its inception in 2014 and replicating the incredibly fun and engaging concept has In 2018, FightMND entered Run Melbourne become more and more popular among third- in July and Sydney’s iconic City2Surf in party fundraisers over the past 12 months. August 2018, successfully gathering a group of fit and fun fundraisers under the banner of In 2018/19, our most successful community TeamFightMND. fundraising events, the majority of which were held within sporting clubs, TAFE, school, TeamFightMND has raised more than any BUILD IT, university and hospital communities, were DIY other charity in Run Melbourne history which COLES & AUSSIE Big Freeze related fundraising events. is something we are both proud of and FIGHT IT – appreciative of. Our inspiring team of runners HOME FOR PORK FARMERS A number of these clubs hosted their second has grown in size each year with over 300 MAY & JUNE 2019 or third Big Freeze events during this year, runners now representing us in the early hours FIGHTMND illustrating the popularity of the concept. of a Sunday morning through the streets of MARCH 2019 Coles and Australian pork farmers partnered FightMND is both enthused and excited that the Melbourne. A free FightMND Runners Pack was with FightMND again in 2019 with a unique Big Freeze campaign is expanding into the wider sent to participants that raised over $1000. For the first time ever, a brand new family home national fresh pork sales campaign that delivered Australian community and in particular in small was built, furnished and donated to FightMND to an outstanding fundraising outcome in the fight rural towns such as Yeppoon in Queensland and Over 400 runners, walkers and rollers auction and raise funds for MND research. against MND. Boxwood Hill in Western Australia, shows the competed in these two events in 2018, raising strength of this particular campaign and of the an extraordinary $487,000 indicating the active The fully-furnished four-bedroom property at Coles donated 10 cents from the sale of all fresh appetite for the Australian community, no matter peer-to-peer sporting events we participate in Clyde North in Melbourne’s south-east, was built pork products sold in over 800 supermarkets where, to support our cause and trying to ‘freeze continue to go from strength to strength. by Henley on land provided by Brown Property nationally to help fund more vital research into MND’, driven by their want for their funds to go Group in its Meridian community with furniture the disease. towards further research. Thank you to everyone who took part and provided by Guests Furniture. fundraised for FightMND at these events in The campaign, in just its second year, raised an Highest community Big Freeze fundraisers in Sydney and Melbourne. The home went under the hammer at a no amazing $520,000 and following the success of 2018/19: reserve auction on Saturday, March 1 and the first campaign in 2018 that raised in excess » Newcastle Big Freeze (NSW) - $218,000 FightMND understands that planning for and after some energetic bidding from a number of $330,000, the support from Coles and the » Echuca Moama Big Freeze (Vic) - $85,000 staging major fundraising events requires a lot of of interested buyers, the hammer fell and the farmers has returned a total of over $850,000. » Yeppoon Big Freeze (QLD) - $65,000 people to invest a great deal of time and for that property sold for $700,000. Boxwood Hill Big Freeze (WA) - $78,000 we appreciate the efforts our supporters make. As a result of the incredibly successful » South West (Cobden) Big Freeze (Vic) - FightMND also extends its gratitude to the campaign, Coles are the largest corporate donor $34,000 To the many thousands of members of the hundreds of locals trades and suppliers that to FightMND. FightMND Army that fundraise, large or small, donated materials and labour to the project as to contribute to the fight against MND, the well as Harcourts Narre Warren South Real We thank Coles and our Australian pork farmers Foundation sends its heartfelt gratitude. Estate for marketing and selling the magnificent for this generous contribution. home. 19 FINANCIAL REPORT.

IN 2019, FIGHTMND INCOME GREW WHERE OUR MONEY FINANCIAL TABLES AT 25% FOR THE YEAR, TO A TOTAL OF $17.0 MILLION, REFLECTING THE COMES FROM INCREDIBLE SUPPORT RECEIVED FROM OUR SPONSORS, DONORS AND VOLUNTEERS. IN TURN, AN EVEN LARGER SUM OF $17.4 MILLION WAS INVESTED INTO CURE MEDICAL RESEARCH AND CLINICAL TRIALS TO PURSUE A TREATMENT AND A CURE FOR MOTOR NEURON DISEASE ALONG WITH PROVIDING EQUIPMENT AND AIDS IN CARE FOR THOSE WHO SUFFER FROM MND.

As at 30 June 2019, FightMND had cash 59% Major Fundraising Campaigns reserves of $26.5 million up from $17.8 million 22% Donations & Gifts as at 30 June 2018. 12% Government Grants The 2020 Budget was approved by the Board 5% Corporate Partnerships and reflects ambitions of yet further growth in 3% Other Revenue our major fundraising campaigns. For the year ending 30 June 2020 we expect growth in net fundraising income to be no less than 15%.

I thank my colleagues for their dedicated WHERE OUR MONEY commitment and support in overseeing GOES appropriate financial management and governance of the foundation. I also thank our sponsors, donors and volunteers who have helped us achieve a strong financial outcome for 2019.

Gary Nugent Foundation Treasurer

The summary financial information provided in this section was extracted from the audited general-purpose financial statements and does not include all the information and notes normally included in a statutory financial report. If you require a full set of the financial statements, please contact FightMND on phone 1800 344 486 or email [email protected] 41% Medical Research (Investment) 34% Clinical Trials (Investment) 12% Care Equipment (Investment) 11% Fundraising Events (Investment) 2% Administration (Investment) 21 OUR OUR PARTNERS. DONORS.

THANK YOU TO THE FEDERAL GOVERNMENT, THE VICTORIAN WE WISH TO ACKNOWLEDGE AND OFFER OUR SINCERE STATE GOVERNMENT AND ALL THE ORGANISATIONS THAT HAVE THANKS TO THE FOLLOWING DONORS WHO ALL CONTRIBUTED SUPPORTED FIGHTMND THROUGHOUT THE YEAR DURING BIG FREEZE 5 AND THE 2018 DANIHER’S DRIVE. $30,000 OR MORE TO FIGHTMND DURING THE YEAR.

GOVERNMENT SUPPORTING JOHN & BETTY LAIDLAW IXOM PARTNERS ESTATE OF JENNIFER DAWN KERR THE VFL CLUB FOUNDATION DOUG BARLOW EVANS FAMILY FOUNDATION HANSEN LITTLE FOUNDATION THE ALBURY SS&A CLUB TOM BARR SMITH MAJOR PARTNERS

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