FightMND invests a further $10.7M in the fight against MND

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.

Previously funded research projects

Thanks to the ongoing support of the Australian public and the FightMND Army,  FightMND has invested more than $48.45 million into 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.

We have invested in 11 clinical trials for Australian patients and 17 drug development projects. It’s projects like these 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 since 2016.

Clinical trials

 

Thanks to the ongoing support of the Australian public and the FightMND Army,  FightMND has invested more than $48.45 million into 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.

We have invested in 11 clinical trials for Australian patients and 17 drug development projects. It’s projects like these 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 since 2016.

Clinical trials

 

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.

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.

FightMND 27 Challenge returns in 2021

FightMND 27 Challenge

FightMND’s newest, national fundraising campaign, the 27 Challenge, is back for a second year and we want you to be part of it.

It’s simple. Sign up and set yourself a physical activity goal that incorporates the number 27 and help raise funds for the fight against Motor Neurone Disease (MND).

Why 27? When someone is diagnosed with MND, the average life expectancy is just 27 months. This needs to change.

From the 27 September to 27 November, you can choose to run, walk, bike, jump, swim, or even dance – what, how and where is up to you as long as it embraces the number 27 and gets you active.

27 minutes, 27 days, 27 kilometres, 27 laps, 27 times in a row – there’s plenty of ways to get creative and have some fun.

Last year, we had people run 27 hour spin challenges, run 27 kilometres, get active 27 days in a row for 27 minutes, even get 27 buckets of ice dunked on their head.

You can sign up as an individual or rally your friends, family, kids and colleagues to join you.

Spring has sprung and with lockdowns impacting so many of us, what better way to kick off some healthy habits and have some fun – all while raising money for FightMND.

Funds raised through the FIghtMND 27 Challenge go directly towards research to find an effective treatment and cure for MND.

Now all that’s left to do is choose your challenge and create a fundraising page.

Don’t forget to share your challenge on social media using #27Challenge.

How will you challenge yourself?

27challenge.fightmnd.org.au

It’s less lonely when you know Aussies are joining the battle

Heather was a successful radio producer and communications consultant before she was diagnosed with bulbar MND in 2017. While initially only her speech was impaired, she gradually lost the use of her limbs and fingers and is now using a wheelchair to move, and an eye-gaze tablet to write.

She says the impact of her diagnosis has been ‘devastating’.

“We’re living with grief and uncertainty every day,” she says. “We’re all grieving in our own way. MND is an extremely cruel disease that could strike your family or friends any time. No known cause, no cure yet. And the number of people getting MND is increasing every year.”

However, she says the efforts and support of all those raising much-needed funds and awareness for MND research provides some comfort.

“Having a chronic disease can be a very lonely experience even if you’re surrounded by love and support. It’s less lonely when you know lots of effort is going into finding a cure and Aussies are aware and joining the battle” she adds.

In her own battle with MND, Heather has still found avenues of hope – seeking joy wherever she could find it.

“When she diagnosed MND, my neurologist suggested thinking of it as ‘living with MND’. Emphasis on living. Because my version of MND started with slurred speech rather than weak limbs, I took up ballroom dancing and went travelling with my family,” says Heather.

“For the first two years I could still live independently. When I got the wheelchair, I found a writing coach and delighted in typing stories and poems. When my fingers stopped working last year, fortunately I  could borrow an eye gaze tablet. Instead of fingertips tapping on the keyboard, the software tracks my eyes as I look at each letter. I can chat, email, text with an eye gaze tablet. Watch TV, movies, and search the Internet. I relish this freedom even though I’m paralysed.”

Technological advancements may have helped ease some of the challenges that come alongside living with MND, yet it is only through continued investment into clinical trials that effective treatments, and ultimately a cure for MND can be found. It is for Heather, and all others who suffer from MND that we continue our fight, and we thank her for sharing her story with us.

 

As part of our partnership with Coles, we’ve been speaking with people across Australia who have been personally affected by MND, documenting their stories and experiences to shed a light on just what living with this disease is like. People like Heather McLean. 

Just “Do it!”

 

To find out more about hosting your own DIY big freeze visit https://diybigfreeze.com.au/

DIY Big Freeze events have become almost as legendary as the Big Freeze at the ‘G thanks to wonderful supporters like Naomi Beasley who rally their community, have a ton of fun and raise important funds for FightMND.

Sharing her story with us, Naomi starts by explaining that her mother Lorna sadly lost her battle with MND in 2002. In her honour, Naomi decided to join the FightMND Army.

Lorna’s Girls at the top of the Echuca Moama Big Freeze slide

Naomi rallied her troops and created two fundraising teams. “Lorna’s Girls” which is made up of her and her girlfriends, and “Lorna’s Cobram Crew” which is led by Naomi’s two brothers and husband.

“Lorna’s Girls” started their fundraising journey with relatively small events, like movie nights, sausage sizzles and raffles, a “Big Night Out” and a “Ladies Day Out”.

Meanwhile “Lorna’s Cobram Crew” established an annual golf day, and quickly realised it was a great way to consistently raise funds and entice returning participants, year after year.

But the Big Freeze called, and together Naomi and her support teams took the plunge, called on their community, and founded the Echuca Moama Big Freeze. The inaugural event was hugely successful and brought their whole region together for a fabulous day that raised vital funds for MND research. They are already planning the next Echuca Moana Big Freeze and are aiming for it to become an annual event, just like the Big Freeze at the ‘G.

“In doing something for others we also brought our community together in fabulous social gatherings that allowed us to share a common goal of finding a cure for MND,” said Naomi.

“All of these events were not only enjoyable for our fundraising team, our local communities have also been very supportive of our events.”

When asked what she would say to anyone thinking about organising a fundraiser for FightMND Naomi says “Do it!”

The Echuca Moama Big Freeze

Not only has she found fundraising for FightMND to be extremely rewarding from a personal perspective, knowing that she is providing hope to those living with MND and that one day there will be a cure for MND makes it even more worthwhile.

What made her most happy about fundraising for FightMND?

“It is most definitely the social side, seeing people come together to have a great fun time while raising much needed funds is so gratifying” says Naomi.

To find out how you can host your own DIY Big Freeze visit https://diybigfreeze.com.au/