Clinical trials

Clinical trials test and evaluate promising new treatments to find better ways to prevent, detect or treat MND.

2021

PHASE 1B – EPHRIN RECEPTOR A4 FC (new drug) (Prof Perry Bartlett, AO)

2020

• ORAL MONEPATEL – PHASE 1 (Dr Susan Mathers)

2016-19

• TECFIDERA IN ALS (TEALS) STUDY
• IC14 TRIAL
• LIGHTHOUSE TRIAL
• COPPER-ATSM TRIAL
• NANOCRYSTALLINE-GOLD TRIALS (RESCUE-ALS)
• PHASE 1 CLINICAL TRIAL – TRIMETAZIDINE TRIAL (Dr Shyuan Ngo) 

Drug Development Projects

Drug Development projects are focused on advancing promising new drugs or therapies through the final stages of testing in preparation for their assessment in clinical trials with MND patients.

2021

• PREVENTING NEUROINFLAMMATION IN MND BY INHIBITING THE mPTP (Prof Seth Masters)
• A MONOCLONAL ANTIBODY TARGETING ALPHA 5 BETA Q INTEGRIN AS A POTENTIAL TREATMENT FOR MND (Prof Larence Steinman)
• PRECLINICAL DEVELOPMENT OF A MONOCLONAL ANTIBODY MODULATING CD38 AGAINST MND (Dr Damien Toulorge)
• TARGETING MISFOLDED PROTEINS WITH MISFOLDUbLs AS A THERAPEUTIC STRATEGY FOR MND (Prof Justin Yerbury)
• TARGETING CK1e-MEDITATED TDP-43 PHOSPHORYLATION IN MND (Dr John Ravits)

2020

• A PHASE 1 TOLERABILITY, SAFETY, PHARMACOKINETICS AND PRELIMINARY EFFICACY STUDY OF ORAL MONEPANTEL IN INDVIDUALS WITH MND (Dr Susan Mathers)
• MODULATING ACTIN DYNAMICS IN ALS/MND AS A NOVEL THERAPEUTIC APPROACH IN ALS (Prof Julie Atkin)
• DEVELOPMENT OF M102 FOR THE TREATMENT OF ALS (Dr Ning Shan)
• DEVELOPMENT OF TDP43-TARGETING GENE THERAPY FOR ALS (Prof Roger Chung)
• COMBINATION THERAPY TO IMPROVE ON CuATSM OUTCOMES IN ALS (Prof Justin Yerbury)
• PRE-CLINICAL DEVELOPMENT OF A SOD1 GENETIC THERAPY IN SPORADIC ALS (Prof Steve Wilton)
• PRE-CLINICAL DEVELOPMENT OF CENTRALLY-ACTIVE COMPLEMENT C3a RECEPTOR MODULATORS AS DISEASE-MODIFYING DRUGS FOR MND (Prof Trent Woodruff)
• SMN2 SPLICE-SWITCHING OLIGONUCLEOTIDE THERAPY DEVELOPMENT FOR MND (Prof Bradley Turner)

2016-19

• PROGRESSION OF C5a ANTAGONIST PMX05 TO CLINICAL TRIALS (Prof Trent Woodruff)
• TARGETING A DEREGULATED COPPER-IRON AXIS TO TREAT SPORADIC MND (Dr Peter Crouch)
• PRECLINICAL DEVELOPMENT OF NEUROPEPTIDE Y FOR THE TREATMENT OF MND (Prof Tracey Dickson)
• A NOVEL EPHRIN RECEPTOR A4-Fc FUSION PROTEIN FOR THE TREATMENT OF SPORADIC MND (Prof Perry Bartlett)
• THERAPEUTICS BASED ON THE PROTECTIVE ACTIVITY OF PROTEIN DISULPHIDE IN MND (PROJECT 1) AND NOVEL THERAPEUTICS TARGETING NEURONAL TRANSPORT PATHWAYS IN MND (PROJECT 2) (Prof Julie Atkin)
• TARGETING THE METABOLISM OF GLYCOSPHINGOLIPIDS AS A NOVEL THERAPEUTIC (Prof Bradley Turner)
• V-SMART® NANOMEDICINE (LAUR-301) (Prof Bradley Bartlett)
• TARGETING METABOLIC FLEXIBILITY IN ALS (MetFlex) (Dr Shyuan Ngo)
• HDAC6 INHIBITION TO RESCUE AXON DEGENERATION IN ALS (Prof Anna King)

IMPACT grants

To accelerate the development of effective therapies for MND, FightMND IMProving and ACcelerating Translation (IMPACT) grants support projects focused on overcoming one or more key barriers preventing the advancement of potential treatments through to clinical trial.

2021

• GENERATING A PROTEOMICS-BASED BIOMARKER FOR MND (Dr Allan McRae)
• EC-FUS – A NOVEL BIOMARKER FOR MND? (Prof Julie Atkin)
• THE GLYMPHATIC SYSTEM: NOVEL BIOMARKER OF DISEASE SEVERITY AND THERAPEUTIC TARGET (Prof David Wright)
• EXPLOITING CRYPTIC RELATEDNESS IN GLOBAL FAMILIAL AND SPORADIC MND TO UNCOVER DISEASE-AND-PHENOTYPE-LINKED GENES (Dr Kelly Williams)
• A HIGH-THROUGHPUT SYSTEM TO IDENTIFY MND RISK GENES FROM GENOME-WIDE ASSOCIATION STUDIES (Dr Fleur Garton)
• IDENTIFICATION OF NOVEL STRUCTURAL VARIATIONS IN ALS GENES TO IMPROVE OUTCOMES OF CLINICAL TRIALS (Prof P. Anthony Akkari)
• RESTORING AUTOREGULATION OF TDP43 IN SPORADIC MND USING SPLICE-SWITCHING ANTISENSE OLIGONUCLEOTIDES (Prof Lezanne Ooi)
• ENHANCING DELIVERY OF GENE THERAPY TO MOTOR NEURONS AND GLIAL CELLS USING FOCUSED ULTRASOUND (Dr Kara Vine)
• SUBPIAL SPINAL CORD DELIVERY AS A STEM CELL-BASED TREATMENT FOR MND (Prof Lachlan Thompson)
• HARNESSING PHASE SEPARATION AS A PRECLINICAL STRATEGY FOR THE TREATMENT OF MND (Dr Marco Morsch)

2020

• DEVELOPMENT OF BLOOD-BRAIN BARRIER PENETRATING PEPTIDES AS A CNS DRUG DELIVERY PLATFORM (Dr Fazel Shabanpoor)
• USING PATIENT-DERIVED CELLS TO DEFINE AN ELECTRICAL SIGNATURE OF SPORADIC ALS AND TO DEVELOP A HIGH THROUGHPUT DRUG SCREENING TECHNOLOGY AND NOVEL THERAPY (Prof Lezanne Ooi)
• IDENTIFYING BIOMARKERS FROM EXTRACELLULAR VESCICLES FOR EARLY DETECTION, DISEASE PROGRESSION AND THERAPEUTIC EFFICIENCY IN MND (Prof Aaron Russell)
• THE USE OF BIOMARKERS TO ADDRESS MND HETEROGENEITY AND IMPROVE DETECTION OF BENEFIT IN CLINICAL TRIALS (Dr Mary-Louise Rogers)
• PRION-LIKE STRAINS OF TDP-43 AGGREGATES IN MND AND FTLD (Prof Justin Yerbury)
• LIPIDOMIC SIGNATURES IN BLOOD AS A NOVEL BIOMARKER FOR MND (Dr Sophia Luikinga)
• USING 3D HUMAN iPSC-DERIVED SPINAL CORD ORGANOIDS TO MODEL OLIGODENDROCYTE NEUROTOXICITY IN MND (Dr Samantha Barton)
• DEVELOPMENT OF A DOSE-ESCALATABLE AAV DELIVERY SYSTEM FOR ALS GENE THERAPIES (Prof Roger Chung)

2016-19

• CHARACTERISING BLOOD-BRAIN BARRIER DYNAMICS TO ENHANCE CNS DRUG DELIVERY AND OPTIMISE MEDICINE USE IN MND (Prof Joseph Nicolazzo)
• PATIENT MONOCUTE-DERIVED MICROGLIA AS A CLINICALLY APPLICABLE MODEL FOR PRECISION TREATMENT OF NEUROINFLAMMATION IN MND (Prof Anthony White)
• POINT OF CARE ASSESSMENT OF VENOUS ACID-BASE BALANCE AND CREATININE AS MARKERS FOR DISEASE PROGRESSION IN PATIENTS WITH MND (Prof Frederik Steyn)
• A NOVEL BIOMARKER FOR ALS (Dr Fleur Garton)
• ESTABLISHING A NOVEL MOUSE MODEL OF SPORADIC MND USING A CHEMOGENETIC APPROACH (Dr Mouna Haidar)
• DISEASE SUSCEPTIBILITY, PRECISION MEDICINE AND ALS (Prof Julie Atkin)
• ESSENTIAL PRE-CLINICAL STEPS TOWARDS A STEM CELL TRAIL FOR MND (Prof Lachlan Thompson)

Angie Cunningham PhD Scholarship and Grant-in-Aid

Honouring the life of Angie Cunningham, FightMND’s Angie Cunningham PhD Scholarship aims to support future leaders in MND research.

FightMND supports biomedical research in the field of Motor Neurone Disease (MND), encompassing all relevant research disciplines. The objectives of the Angie Cunningham Scholarship Scholarship and Project Grant-in-Aid Award are to:

• Support research aimed at understanding the causes of sporadic MND,
  elucidating disease mechanisms and facilitating the translation of therapeutic strategies from the laboratory to the clinic;
• Encourage new interest within the field of MND research from exceptional new postgraduates;
• Help develop PhD graduates who demonstrate academic leadership,
  independence, creativity and innovation in their work and foster a passion for future MND research;
• Honour the memory and legacy of Angie Cunningham

https://www.facebook.com/plugins/video.php?height=314&href=https%3A%2F%2Fwww.facebook.com%2FFightMND%2Fvideos%2F2115138615291252%2F&show_text=false&width=560&t=0

Angie Cunningham Scholarship recipients:

• Ted Wang 

Read more

Drug Screening Platform

In 2017, with support from the Andrews Labor Government, FightMND partnered with the Balcon Group Pty Ltd to establish the FightMND Drug Screening Program. The four-year, $5M program aims to establish a high-throughput drug screening platform to screen approved and experimental treatments on motor neurons grown from skin cells from Australians living with MND.

The FightMND Drug Screening Program has drawn together an expert team of stem cell scientists and MND clinicians and made significant progress over the last four years. The major research outcomes for the study include:

• the generation of the world’s second-largest MND iPSC bank available for drug screening and a vital tool for MND researchers globally
• the development of a robust motor neuron generation protocol that will be published and shared within the research community
• an MND specific drug screening platform and pipeline for screening approved and novel promising therapeutics
• the foundation for comprehensive single-centre multidimensional characterisation.

We’re four months into 2022, so here’s a quick roundup of what’s been happening in the world of MND research.

Record number of FightMND research grant applications 

Applications for the 2022 FightMND research grant round closed on Monday 4 April.

FightMND received a record number of applications from MND researchers across Australia and around the world.

Over the next few weeks, MND experts from all over the world will be reviewing the applications, helping ensure only the most promising research gets funded.

We thank the researchers who have applied for their time and effort in preparing their applications and wish them good luck.

The outcomes of the 2022 grant round will be shared later in the year.

Professor Matthew Kiernan receives Sheila Essey Award

Professor Matthew Kiernan from the University of Sydney has received significant funding from FightMND, leading several clinical trials for Australians with MND.

In recognition of his amazing research achievements and contribution in the MND research sector, he has been awarded the highly prestigious Sheila Essey award by the American Academy of Neurology.

As the first Australian neurologist to receive this honour, this award reflects the tireless work Prof Kiernan has committed to helping his patients with MND/ALS.  

Read more

Lighthouse II (Phase 3) Clinical Trial begins recruitment

In an exciting step forward, the Lighthouse II (Phase 3) trial began recruiting in their first round of drug trials this year.

With the first patient being enrolled in the trial for MND earlier this year, participants will be part of an international effort, testing the efficacy of a drug called triumeq.

Aiming to enrol 390 participants from across Australia, Europe, and the UK, FightMND are proud to support the Australian component for up to 90 participants. FightMND also supported the successful Lighthouse I (Phase 2) trial in 2016, which has paved the way for this Lighthouse II study.  

Read more 

Best and brightest MND minds come together for MND Symposium in Brisbane

For the first time in two years, some of our best and brightest minds in the Australian MND research sector will be coming together to share updates, findings, and advancements in MND research.

Co-funded with MND Research Australia, the first-ever Australian and New Zealand MND Research Symposium is set to be held in Brisbane from 28 – 30 April.

With registrations now open, the three-day event will provide a unique opportunity for MND researchers and those with a lived experience of MND to collaborate, connect and learn.

Featuring over 55 presentations, 50 posters, a symposium dinner, platform and poster prizes and Q&As with Australia’s leading MND researchers, it is an event not to be missed! 

Read more 

Key risk-factor gene for MND identified 

An important link between a key risk-factor gene (UNC13A) for MND/ALS and a significant feature of the disease has been identified.

Published in the journal Nature, the study indicates that the loss of a protein called TDP-43 in the part of a motor neuron that stores its genetic information, can cause changes in the UNC13A gene, and increase the risk of MND/ALS.

These new findings are especially exciting as they have improved the understanding of MND and provide further support for the development of TDP-43-targeted therapies.  

Read more

PedalCure4MND has now cemented itself as one of FightMND’s largest community fundraisers ever, raising nearly $500,000 for the fight against MND this year.

See PedalCure4MND’s live fundraising tally here.

On Saturday 12 March, 94 riders and 20 volunteer support crew rolled into Ariah Park, wrapping up their heroic seven-day, 880 kilometre Riverina cycling challenge.

Starting in Temora on 5 March with an extra special send off from Neale’s mum Edna, the route took riders to the towns of Lockhart, Berrigan, Albury, Wagga Wagga, Narrandera, Griffith before celebrations got underway at the finish line in Ariah Park.

Averaging 100 – 138km per day, the ride saw participants cycle from town to town, before camping overnight at local football grounds and enjoying the local hospitality of welcoming regional communities.

More than a bike ride, the event sets out to raise awareness and funds for MND research and care.

At the night events during the ride, participants were joined by members of the local community to celebrate and hear from FightMND’s Founder Pat Cunningham, Para-Olympic Gold medallist Scott Reardon, former Australian Opals Basketballer Lauren Jackson, Media legend Jason Richardson and MND Researcher Prof. Aaron Russell.

Organiser and Lockhart local John Fox said, “while the ride is a serious physical challenge, it’s worth every effort to help beat MND.

“While it’s a big distance to cover on a bike, it’s also a very satisfying experience riding with great people all who are trying to help raise funds for MND research,” Mr Fox said.

“We had a great support team that lead us along the route and helped keep us fuelled with food and drinks between towns.”

Now in its third year, the event which is held every two years has now raised more than $820,000 in total for FightMND.

FightMND CEO Dr. Fiona McIntosh recognised the outstanding efforts of everyone who helped make this event an outstanding success.

“On behalf of everyone at FightMND, I want to extend a heartfelt thank you to Team PedalCure4MND for their ongoing and inspiring commitment, both on and off the bike, to the fight against MND,” Dr McIntosh said.

“This year, I’m especially thrilled to congratulate PedalCure4MND on reaching a momentous milestone, raising nearly half-a-million dollars this year alone, taking their total funds raised for MND research and care to more than $820,000.”

“The progress being made in research laboratories around the world would not be possible without the support of everyone involved in PedalCure4MND.”

FightMND would like to also personally acknowledge ride organisers Paul Bruest, John Fox and Paul Ansell for their mammoth efforts over the past few years, as well as the local Riverina communities and sponsors and partners including Supra Capital, A2 Milk, Diageo (Bundy Rum), Sureway Employment & Training, Supra Capital, Removed A2 milk again), Matthews IGA Group, Delta Agribusiness, The Famous Australian Sign Company (Albury) and Triple M Riverina.

Rumour has it that ride organisers now have Tassie in their sights for the next ride in 2024… stay tuned.

FightMND is very excited to announce a new partnership with Ty through the upcoming release of a Ty Beanie Boo – Tony the Penguin.

Now on sale globally, 100 percent of the profits from original sales of the popular and collectible Ty Beanie Boo will go towards FightMND in the fight against Motor Neurone Disease (MND) (also known as Amyotrophic lateral sclerosis (ALS)) worldwide.

The special FightMND Tony the Penguin Beanie Boo is now available in Coles, ToyWorld, NewsXpress and more great retailers.

Money raised through the global sale of Tony the Penguin will help fund vital and urgent MND/ALS research to find effective treatments and ultimately a cure for the disease.

The average life expectancy of a person diagnosed with MND/ALS is only 27 months. There is currently no effective treatment or cure.

Ty Inc is the largest manufacturer of plush in the world, and its Chairman, CEO and founder Ty Warner, is honoured to be joining the fight.

“Hopefully this special Beanie Boo, named after my great friend and Australian distributor Tony, will bring awareness around the world to this horrible disease, and bring us closer to beating the beast that is MND/ALS”.

A philanthropist, Mr Warner has donated more than $300 million to a variety of charities worldwide including the American Red Cross, UNICEF, United Way Worldwide, Ronald McDonald House, WIRES, and many more.

FightMND CEO Fiona McIntosh thanked Ty for joining the global fight against MND and helping raise awareness of the disease which has no effective treatment or cure.

“Anyone with children knows how popular Beanie Boos are, which is why we are very excited to partner with Ty and have our own special FightMND Tony the Penguin join the Beanie Boo family,” Dr McIntosh said.

“The money raised through this new partnership will go towards cutting-edge research to teach us even more about the disease and how to fight it.”

“Every dollar raised for the fight against MND takes us another step closer to finding effective treatments and a cure,” Dr McIntosh added.

Tony the Penguin is the newest fundraising item for FightMND, which will be offered in addition to the famous blue Big Freeze Beanies, which go on sale in Australia at Coles, Bunnings and online in May 2022.

After his mother-in-law was diagnosed with Motor Neurone Disease (MND), Dr Allan McRae began collaborating with researchers in the Sporadic ALS Australia Systems Genomics Consortium (SALSA-SGC).

“I saw firsthand the devastation this disease causes for both the patient and their family and friends,” said Dr McRae.

This firsthand experience spurred on his motivation to investigate biomarkers of the disease in the hopes of speeding up diagnosis, monitor disease progression, and to identify potential treatment options.

As part of his research, Dr McRae hopes that by characterising neurological protein levels measured in blood plasma, these proteins may serve as biomarkers, helping to predict disease risk or diagnosis.

“These proteins are generated in the central nervous system and are presumably released into the blood plasma from neurons that are damaged in MND,” he says.

“Proteins represent the main layer of information transfer from the genome to disease and represent the largest class of drug targets.

“This means that findings from our study of protein differences have strong potential for identifying new biomarkers for disease diagnosis and progression monitoring, as well as identifying possible drug targets.”

Learn more about Dr Allen McRae’s project here. 

For over seven years, FightMND has been working to find a cure for MND by funding bold and outstanding research from around Australia and overseas. Dr McRae is one of this year’s successful grant recipients, receiving an IMPACT grant, co-funded by FightMND and MND and Me Foundation based in Queensland.

Dr McRae’s research project has been awarded $250,000 in honour of Murray Geale, a Queensland man living with MND. The grant was awarded in recognition of Murray’s incredible contributions to the research of MND through significant fundraising, awareness-raising and research project and initiative participation. Murray also played a pivotal role on the inaugural MND Research Summit Committee.

Mr Geale said he felt humbled and thankful that the grant was named in his honour and credited much of his impact on MND research to the support of his friends and family.

“The naming of the IMPACT Grant in my honour is a tremendous recognition of the work that my family and friends – particularly my cycling friends – have done when it comes to not only raising much-needed funds for research but also getting the message out to the broader community that MND research is the key to solving the MND riddle and importantly developing effective treatments,” Mr Murray said. 

“What excites me about Allan’s research is that it may lead to the establishment of an effective disease biomarker which in turn will assist in MND diagnosis and the effectiveness of MND treatments.”  

Dr McRae is a first-time funding recipient from FightMND and MND and Me, and it is also the first time his group has received funding to focus on MND specifically, meaning that his group will be able to firmly establish this branch of research into the future.

“Without dedicated funding, we would not be able to analyse sufficient numbers of samples to draw solid conclusions…samples provided by MND patients are a precious resource, and it would be difficult to justify performing this experiment at a smaller scale,” Dr McRae said. 

Research like that being conducted by Dr McRae and his team is essential to not only improving the lives of those living with MND and making steps towards eventually finding a cure but offering hope for people living with the disease.

“MND patients go through many emotions. Post-diagnosis, you are told “get your life in order”; you do; then you wait for the disease to advance and steal your life,” said Mr Geale.

“However, many living with MND also live in hope and it is this hope that, in my opinion, underpins an MND patients’ willingness to participate in promising research and clinical trials… to have hope that there will be a chance that we may live a normal life. Hope is that powerful force that pushes back on despair and we all need hope.”

“Researchers are the torch bearers of our hope,” Mr Geale added. 

Funding for new research would not be possible with the generous contribution and donations of the FightMND Army. While research is expensive, and it takes time, thanks to ongoing donations, Australia’s research capacity and capability continues to grow. Every day we are learning more about how to fight back against the Beast and deliver the knockout blow. 

If you’d like to learn more about this year’s successful research grant recipients, please visit fightmnd.org.au/cure/

The last few years have been difficult for community sports. With interruptions to competitions and meets, opportunities for fundraising and community outreach have been limited. But one community has managed to pull together and do something incredible.

For the third year in a row, the Gisborne Football Netball Club raised thousands of dollars in the fight against MND. This year, their fundraising efforts reached new heights, raising $104,770 predominately through the sale of Big Freeze beanies and Sockit2MND socks as well as donations. This brings their total fundraising efforts to more than $236,150 in only three years.

Representatives from all four clubs who make up the Gisborne Football Netball Club, along with Essendon Football Club coach Ben Rutten and rising star Harry Jones were on hand as Darren Ponton, Chairman of the Golden Bulldogs Coterie Group presented FightMND CEO Fiona McIntosh with the cheque. 

“Year after year, we are blown away by the support and enthusiasm of the Gisborne Football Netball Club community and cannot thank them enough for their outstanding contribution to the fight against MND in 2021,” said Dr. McIntosh.

“Research is expensive and takes time, but with the support of the whole FightMND Army, we are able to make targeted investments in research to find effective treatments and ultimately a cure for MND.”

The whole Gisborne community banded together over the cancelled season to make Gisborne Football Netball Club’s fundraising goals a reality.

Essendon coach Ben Rutten, whose sons Jack, 13, and Bernie, 11, play for Gisborne, commended the teams’ efforts over the last few years.

“Gisborne and the footy and netball club is the heart of the community and brings everyone together and whenever there is a good cause, it’s fantastic to see the support that everyone puts in,” Rutten told the Herald Sun.

Golden Bulldogs Chairman, Darren Ponton offered his congratulations, commending the efforts of the Gisborne Football and Netball Club, Gisborne Masters Football Club, Gisborne Giants and Gisborne Rookies junior football netball clubs, noting that their 2021 fundraising season had far surpassed the amount raised in the previous two years.

“It could have been even bigger had COVID not put an end to the planned game day which promised so much fun and family engagement – also to wear the beanies and socks with pride and sell even more,” Mr Ponton told the Midland Express.

“It’s been all about the Gisborne community coming together for a great cause.

“This partnership between the clubs, supporters, sponsors and Fight MND is one that we hope continues to break records each year, whether in adversity or not,” the Golden Bulldogs chairman said.

Fiona McIntosh said that the efforts shown by the community of Gisborne demonstrated “the power of footy and netball clubs”.

“It means a huge amount, because everything we raise, we do our best to invest in vital MND research as well as people living with MND, and this year we were able to invest $10.7m in research.”

Working through the year, and pushing their fundraising efforts to new heights, Ms McIntosh said that Neale Daniher would have been proud that the Gisborne sports clubs had “absolutely played on”.

“That was the motto of the Big Freeze campaign, and it’s what Neale does every day and it’s certainly what these guys did when they insisted on selling beanies during very challenging times,” she said.

FightMND would like to once again offer our thanks to the incredible efforts shown by the Gisborne Football Netball Club and their community.  

The fight against Motor Neurone Disease (MND) has received a multi-million-dollar boost with FightMND announcing a further $10.7 million investment into research and care equipment for people living with MND.

This major funding commitment takes the total amount the charity has invested into research and care to more than $63 million since it began in 2014.

Of the total $10.7 million investment in 2021, $8.4 million will go towards 16 MND research projects including one clinical trial, five drug development projects and ten IMPACT projects to help accelerate the development of promising research and effective therapies for MND.

Announced at the Big Freeze 7 in Melbourne this year, the Federal Government also pledged an additional $2 million towards an exciting new MND research initiative, which will be finalised in the coming months.

For the full project summaries, click here.

As part of this year’s research grant round, FightMND received 47 funding applications, worldwide.

The remaining $2.3 million will go to state-based MND organisations to enable the purchase of essential care equipment such as mobility, communication and respiratory support devices to help improve the lives of those fighting the disease.

More than 2,000 Australians are currently living with MND. With an average life expectancy of 27 months from diagnosis, MND gradually takes away a person’s ability to move, speak, eat, swallow and breathe. There is currently no effective treatment or cure.

This year’s funding comes largely from community donations and money raised through beanie sales from a record-breaking Big Freeze 7.

FightMND CEO Dr. Fiona McIntosh thanked FightMND’s Army of supporters who have continued to support the organisation despite another challenging year impacted by the COVID-19 pandemic.

“This investment would not be possible without the support of our FightMND Army. To our generous donors, major partners, volunteers, supporters and the Federal and Victorian State Governments – thank you for taking up the fight with us.”

“Every Big Freeze beanie sold, donation made and time volunteered means that we can continue to land solid blows against the Beast, year after year.

“For those currently fighting the disease, your courage never fails to inspire us. You are the reason why we do what we do,” Dr McIntosh said.

Research Director Dr. Bec Sheean said that Australia’s MND research capacity and capability continues to grow thanks to the generosity and ongoing support of the Australian public.

“Research takes time but there is growing optimism in the research community because we are starting to see real momentum – every day we are learning more about how to fight the disease,” Dr. Sheean said.

“With ongoing support and donations, we are able to make targeted investments in cutting-edge projects focussed on fast-tracking new treatments.”

“People living with MND in Australia now have more opportunities to participate in research or clinical trials and more access to care equipment to improve their quality of life.”

FightMND would like to acknowledge the generous contribution of the Federal Government and Victorian State Government as well as major partners (Bunnings, Coles, Channel 7, Herald Sun, the AFL and Chemist Warehouse), donors, community fundraisers, volunteers and supporters.

FightMND are more determined than ever to fight back against the Beast, offer hope and end the suffering of those living with MND.

“The fight is not over and the battle will continue until a cure is found. This investment takes us another step closer,” Dr McIntosh added.

To support the work of FightMND, please visit fightmnd.org.au/donate

Read the article as it appeared in the Herald Sun – ‘Generous Victorians behind FightMND milestone‘.

For media enquiries, please contact 0403001644.

Mike Schneider steps into the role of FightMND Chair

FightMND is pleased to announce Mike Schneider, Managing Director of the Bunnings Group, as our new Board Chair. 

Mike will take over from Bill Guest, who after more than three years is stepping down as Chair but will remain an active member of the FightMND Board.

FightMND would like to acknowledge and thank Bill for his passion, leadership, sense of fun, wisdom and ongoing commitment to the organisation. Since the beginning, Bill’s support and contribution to FightMND has been enormous – particularly his ability to bring people together around the cause to fight back against the beast.

As the Managing Director of Bunnings Group, Mike brings extensive experience and leadership to the role of Chair along with a strong connection to Motor Neurone Disease and FightMND.  

“Bunnings has supported FightMND over the last three years and this has given me a chance to see the work the organisation does to provide much-needed funds for research into a cure for this horrible disease,” Mike said. 

“I have listened and learned from family and friends about the challenges those diagnosed with MND face every day in their own personal fight against this beast. I’ve also seen firsthand the stress, pain and sadness of those who have lost loved ones to MND. Finding effective treatments and a cure would make a profound difference to so many people’s lives.”

The appointment of Mike as Chair marks an important phase of growth for FightMND, adding to the strength and success of the organisation from humble beginnings around the kitchen bench at the Daniher home to a bold and ambitious national charity. 

In seven years, FightMND has invested over $48 million into MND research and has become one of the largest independent funders of MND research not only in Australia but globally. Alongside research funding, FightMND has also invested nearly $5 million into care equipment for people living with MND. 

In taking on the role of FightMND Chair, Mike recognised the work of his predecessor and the organisation’s founders, flagging his enthusiasm to build on their important work. 

“Bill Guest, along with Neale Daniher and Pat Cunningham have been instrumental in the development of Fight MND. Thanks to these leaders, FightMND is now a leading charity in Australia in providing funding for world-class research into effective treatments and a cure for MND.”

“I am excited to work with FightMND’s CEO Dr Fiona McIntosh, the Board and wider team to deepen the community’s awareness and support for this incredibly important area of research,” Mike said. 

With a passion for seeing people and organisations thrive through strong cultures, clear, aligned purposes and actions, and brand trust, Mike’s vision for FightMND centres around building strong connections with the FightMND Army. 

“We have a responsibility to do all that we can to demonstrate the highest standards of trust and engagement with the army of people who have joined the fight against ‘the beast’ – from government to businesses and the thousands of Australians who buy a beanie or fundraise for FightMND each year.” 

“I know that the Board and team are committed to finding new ways to grow awareness of MND in the community and develop new programs and initiatives to ensure that we can build on the great work that has been done to date.”

Outside of Mike’s role at Bunnings he also sits on the boards of mental health charity Love Me Love You, the Corporate Mental Health Alliance of Australia and Melbourne United Basketball Club.

The Big Freeze 7 was a record-breaking year for the fight against MND, raising more than $14 million for vital MND research and care.

Relive the fun and highlights from the Big Freeze 7 event.