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Catholic College Wodonga is all in for the Big Freeze

Catholic College Wodonga is an inspiring example of how communities across Australia have been coming together to support the fight against MND with their own DIY Big Freeze.

On Friday June 3, Catholic College Wodonga will host their own Big Freeze event, which will feature a selection of local stars as sliders, including both Albury and Wodonga mayors, parent and business owner Seb Nedziak from the Gumtree Pies, and various student representatives.

As part of their support, the school has also officially changed their uniform for the week, allowing students to proudly wear their FightMND socks and beanies until Friday. Both beanies and socks are also on sale at the school.

The school’s fundraising efforts were inspired by colleague, friend and teacher, Carolyn Packer, who was diagnosed with MND in August 2021. Carolyn joined the school in 1997 and spent many years teaching across all year levels in the Maths Faculty.

Carolyn is a diehard Collingwood supporter, and students and staff will be encouraged to wear black and white, the Collingwood colours, in her honour for our Big Freeze Day.

The college is also hosting a trivia night, including silent auction and raffle, on Saturday 4 June which will see over 420 people come together to promote awareness of, and raise money for MND.

Karen Coates, Executive Assistant to Principal commented: “We have been overwhelmed by the generosity of our local community and we sincerely thank them for coming together to support this very worthy cause.”

Hosting a DIY Big Freeze is the perfect opportunity to bring together your friends, work mates or community, have some fun and raise money for a worthy cause. Head to https://diybigfreeze.com.au/ for more information on how you can host your own Big Freeze event.

New Australian clinical trial to test a cancer drug to treat MND

A new Australian clinical trial testing a cancer drug to treat MND is set to commence next month thanks to direct funding from FightMND.  

PharmAust, a Perth-based biotechnology company, is undertaking a Phase 1 trial of the effect of its lead drug candidate, monepantel, for the treatment of motor neuron disease (MND). This drug trial was made possible thanks to an investment from FightMND of $881,085. 

Monepantel has demonstrated preliminary evidence of efficacy in a previous clinical trial to influence cancers and shown effects in preclinical investigations of neurodegenerative diseases such as MND. 

The tablets involved in the trial are designed with a particular shape and size to help MND patients who often have difficulty with swallowing to take them and to reach specific blood drug levels targeted for this disease. 

The Phase 1 trial will test the safety and tolerability of monepantel in patients living with MND and will look for signs that monepantel can slow the progression of MND. The data gathered will determine whether monepantel will be tested through larger Phase 2 studies. 

This clinical trial is the latest of thirteen trials funded by FightMND since the organisation’s inception. These vital funding opportunities have been made possible due to the continued support of the Australian public, particularly as part of the Big Freeze campaign.  

FightMND’s Research Director, Dr Bec Sheean stated, “We are excited to support this Phase 1 study and to continue to provide access to clinical trials for Australians with MND. We thank people with MND for their participation in this study and our FightMND army for allowing us to support vital research in the search for effective treatments and a cure for this disease.”  Dr Bec Sheean, Research Director at FightMND.” 

PharmAust’s Chief Scientific Officer Dr Richard Mollard commented, “We are pleased with the development of our Phase 1 MPL (montepantel) trial for MND and look forward to commencing recruitment. We are grateful for the continued support from FightMND and thank everyone supporting the Big Freeze 8 and FightMND.” 

Find out more about the PharmAust clinical trial here.

Funded research projects

Thanks to the ongoing support of the Australian public and the FightMND Army,  FightMND has invested more than $55.9 million into MND research since 2014.

Together we have made real progress towards effective treatments and a cure since the Army answered the call seven years ago.

People living with MND now have more opportunity to participate in research or clinical trials throughout Australia. It is proof of the accelerating progress we0 are making to end MND.

From clinical trials to drug development projects, it is research like this that will help us find more effective treatments and ultimately a cure.

Below you will find a list of the clinical trials, drug development projects and impact grants we’ve invested in from 2016 – 2021

Clinical trials

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

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.

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.

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

Angie Cunningham Scholarship recipients:

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.

Ty set to raise funds for FightMND with a new Beanie Boo in 2022

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.

Researchers awarded grant in Murray Geale’s honour

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/

Gisborne Football Netball Club take their fundraising to new heights

​​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.