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FightMND to invest $13.4 million into MND research

FightMND has announced that this year, the national charity will invest a further $13.4 million into Motor Neurone Disease (MND) research to find better treatments and a cure.

This major funding announcement takes the total amount that the Australian charity, co-founded by AFL legend Neale Daniher AO, has invested into both research and care initiatives to $76 million since it first began in 2014. In only eight years, FightMND has become one of the world’s largest independent funders of MND research.

Of the total $13.4 million investment, $10.9 million will go towards 19 MND research projects including two new clinical trials, two drug development projects, and 15 other research projects aimed at accelerating the development of innovative research and effective therapies for MND.

The remaining $2.5 million will fund six fellowships to support career pathways for outstanding, game-changing researchers in MND both in Australia and across the world. For the first time, three of these International Research Fellowships will be co-funded with the Healey & AMG Centre and ALS Finding a Cure®.

FightMND Research Director Dr Bec Sheean said that she was excited about the opportunity to help further strengthen FightMND’s role as a global leader in the fight against MND, giving Australians living with MND more opportunities to participate in research both in Australia and internationally.

“By funding the best, high-quality research and connecting the world’s most innovative MND minds, FightMND is playing a lead role in the global fight to find a cure for this devastating disease,” Dr Sheean said.

“This year’s projects look at MND from different angles – to understand the causes, support early diagnosis and track how a person’s disease is progressing as well as projects on developing better tools for studying MND in the laboratory.”

“Most importantly, these projects are focused on impact with goals to improve the lives of people living with MND,” Dr Sheean added.

FightMND CEO Dr Fiona McIntosh acknowledged the generous contribution and commitment of FightMND’s supporters throughout the year.

“It’s one of my favourite times of the year where we have the privilege of turning the generous donations we receive into promising research that will improve the lives of people impacted by MND, now and in the future,” Dr McIntosh said.

“Scientific research is expensive, and it is only thanks to your donations and ongoing support that we can continue to invest with determination and relentless urgency to win the battle against the Beast,” Dr McIntosh said.

“From funding the best research in the world as well as care initiatives that improve the lives of people living with MND, every beanie sold and donation made to FightMND makes a difference.”

FightMND would like to specifically acknowledge the generous contribution of the Federal and Victorian Governments as well as major partners in Coles, Bunnings, the AFL, Chemist Warehouse, Jayco, Herald Sun, Channel 7, community fundraisers and volunteers.

View the project summaries here: https://fightmnd.org.au/cure/

Download the booklet here.

None of this research is possible without your support. Help us keep up the fight by donating today. Donate now. 

By the numbers

  • Of the total investment in 2022, $13.4 million is allocated to funding 25 MND research projects, including:
    • 2 Clinical trial grants
    • 2 Drug Development projects
    • 3 Discovery Research grants
    • 10 IMPACT projects
    • 2 Collaborative Initiatives
    • 2 Mid-Career fellowships
    • 1 Early-Career fellowship
    • 3 International Research fellowships
  • The research funding is distributed among the following Australian states:
    • NSW – 5 projects, almost $3 million in funding
    • QLD – 4 projects, almost $1.5 million in funding
    • VIC – 8 projects, over $5 million in funding
    • WA – 1 project, almost $250,000 in funding
    • SA – 1 project, almost $500,000 in funding
    • TAS – 1 project, almost $1 million in funding
    • International – 5 projects, over $2 million in funding
  • FightMND received 71 research grant applications in 2022
  • Of the $69.3 million invested into MND research since 2014, FightMND has funded a total of:
    • 14 new Clinical Trials
    • 24 Drug Development projects
    • 35 IMPACT grants
    • 23 other research initiatives
    • World-first Drug Screening Platform
    • 11 research Fellowships and Scholarships
    • Precision Medicine Program
    • Sporadic ALS Australian-Systems Genomics Consortium (SALSA-SGC)

When you donate to FightMND, you help fund cutting-edge MND research focussed on fast-tracking new treatments as well as care initiatives to improve the lives of people living with MND.

Please support the FightMND Christmas Appeal and help bring hope to families who are living with MND. Join the fight and donate today.

Daniher’s Drive fast five – Saturday 15 October

Fast five – Saturday 15 October

Lakes Entrance – Metung – Warragul

VicTraffic notifications

Here are the top five things you need to know for the first official day of driving:

1. Team and convoy photo

Location: Esplanade, Lakes Entrance – near the Lakes Entrance Rotunda.

  • 10am – Group photo on the foreshore
  • 10:30 – Begin assembling along the Esplanade, behind the FightMND bus.
  • 11am – Convoy departs for Metung

The convoy photo will take some coordination – please be patient and if you’ve got a question, chat to the team from FightMND.

2. Traffic and road conditions

Please note that there are roadworks between Rosedale and Sale.

Don’t forget to stock up with sunscreen at Chemist Warehouse in Sale or grab some refreshments in at Coles Express in Sale (corner of York and Macarthur St, Sale).

Remember, if you take a photo of yourself at a Coles Express and tag @colesexpress @fightmnd, you could win a $200 Coles Express voucher.

3. Weather

Lakes Entrance/Warragul – min 9, max 19. A stunning day – partly cloudy. Slight (20%) chance of a shower near the New South Wales border, near zero chance elsewhere. Winds northwest to southwesterly 15 to 20 km/h tending south to southwesterly in the middle of the day then becoming light in the evening. Daytime maximum temperatures between 14 and 19.

4. Lunch in Metung

There are two sitting for lunch today – 12pm and 1:15pm. Please don’t be late and make sure you’re ready for one of two sittings.

Drew will be coordinating activities in Metung – please keep an eye on the Whatsapp.

5. Dinner and Bus Transport – Halloween Costume Party 

7pm, Lardner Park, Warragul. Ensure you’re ready to dance the night away in your best outfits. We can’t wait to see you all. Prizes will be awarded so make sure you get ready to impress.

We’ll also be joined by Mr Brightside himself – Neale Daniher AO.

Book your spot on the bus for tonight here.

Need assistance?

Got a question or want to report a road hazard, please drop the FightMND team a text or give us a call on 0447 252 948. In areas of low reception, please text with a time stamp.

Vehicle troubles?

  • Rod Hoogkamer is travelling with us in the Red Devil car, Rod is a qualified mechanic and is here to help. He can be contacted on: 0459 991 048
  • If you do give him a call, please provide details about your location, including landmarks, as well as a description of your vehicle so he can find you.

First aid

  • Travelling within the convoy are 4 first aid kits and these vehicles have a green First Aid cross on their front and rear window.
  • A Defib will travel with our volunteer first aider, and this vehicle has a green AED DEFIB sign on the front and rear windows.

Chemist Warehouse & Coles Express

  • Our very good friends at Chemist Warehouse have launched their POS fundraising campaign. If you need any health or beauty supplies throughout the Drive, please make sure to pop into a Chemist Warehouse, and don’t forget to say hello to the friendly team members and thank them for their support.
  • Coles Express have donated a $200 voucher for each Drive team. We will be running a competition to win another $200 voucher and all you need to do is take a photo of yourself in a Coles Express and post to your social media channels, while tagging FightMND and Coles Express, and you could be the lucky winner of another voucher. Happy snapping.

 

Daniher’s Drive fast five – Friday 14 October

Fast five – Friday 14 October

Melbourne – Yarragon – Bruthen  – Lakes Entrance 

PLEASE NOTE: Please ensure that you complete a RAT test before attending the Drive. 

Here are the top five things you need to know for the first official day of driving:

1. Yarragon

Our convoy will convene in Yarragon. Please aim to arrive by 9:30am for a 10am convoy departure travelling behind the FightMND branded coach. There’s plenty of parking along the service lane and side streets and lots of cafes for you to grab a coffee. Please head to the rotunda in the main street to say hi to the FightMND when you arrive.

2. Traffic and road conditions

The roads will be wet and there may be some surface water so please drive to the conditions. Remember it’s not a race.

Please be aware there are some significant potholes on the Princes Highway in the lefthand lane, especially.

When heading from Yarragon to Bruthen, please avoid travelling through the low-lying areas of Maffra and Heyfield. Take the A1 driving route through Sale.

At this point, you may want to stop in at the Coles Express in Sale (corner of York and Macarthur St, Sale) to grab some refreshments and take a pic for socials to go in the running to win a $200 voucher.

Also if you see a Chemist Warehouse, please stop in, stock up and say hi to the team.

3. Weather

Bruthen/Lakes Entrance – min. 9, max. 20. Rain easing. 95% chance of rain (8-15mm)

East Gippsland area:

Partly cloudy. Very high (95%) chance of rain, most likely in the morning and afternoon. Snow falling above 1400 metres. The chance of a thunderstorm. Winds northwest to northeasterly 25 to 40 km/h tending west to northwesterly 20 to 30 km/h early in the morning. Overnight temperatures falling to between 5 and 10 with daytime temperatures reaching between 11 and 19.

4. Lunch in Bruthen 

Lunch is at your leisure. The town of Bruthen is expecting us, and they have a range of eateries for us to enjoy, including a pub, brewery, bakery, take away and more. Please depart by 3pm for Lakes Entrance.

5. Dinner & Bus Transport – Comedy and Auction Gala

7pm, St Brendan’s Community Hall – 40 Golf Links Road, Lakes Entrance. Dinner is a sit-down, two-course dinner with allocated seating. Tonight, you’ll be entertained by comedian Adam Rozenbachs and have the opportunity to bid on some fabulous auction items. See the auction booklet here.

Book your spot on the bus to the event here (closes 4pm, Friday 14 October).

Need assistance?

Got a question or want to report a road hazard, please drop the FightMND team a text or give us a call on 0447 252 948. In areas of low reception, please text with a time stamp.

Vehicle troubles?

  • Rod Hoogkamer is travelling with us in the Red Devil car, Rod is a qualified mechanic and is here to help. He can be contacted on: 0459 991 048
  • If you do give him a call, please provide details about your location, including landmarks, as well as a description of your vehicle so he can find you.

First aid

  • Travelling within the convoy are 4 first aid kits and these vehicles have a green First Aid cross on their front and rear window.
  • A Defib will travel with our volunteer first aider, and this vehicle has a green AED DEFIB sign on the front and rear windows.

 

Changes to Daniher’s Drive

Given the weather event currently unfolding in Victoria, FightMND Campaigns Director, Bec Daniher has an update for our Daniher’s Drive participants.  

While the weather forecast may look bleak – the good news is that Daniher’s Drive is still going ahead.

Despite the weather event currently unfolding across Victoria, we’ve found a way to ‘play on’ with some tweaks to the planned route and activities on Day 1 and 2.

At this stage, the Drive route from Bruthen, via Lakes Entrance to Lardner Park, Warragul remains unchanged.

We want to make sure you have an unforgettable event, and your safety remains our number one priority.

Day 1 – Thursday 13 October

  • Unfortunately, the launch breakfast will not go ahead tomorrow as planned and we won’t be able to take our Drive convoy to Wallan, Euroa or Myrtleford.
  • At the moment, sections of the route remain closed or at risk of landslips and flooding, with high winds and rain forecast for Victoria’s North East.
  • Instead, we’ll be hosting an event in Melbourne on Thursday evening to bring our Drive family together.
  • We strongly encourage you to reach out to your accommodation providers in Myrtleford and Bright as some of you may be eligible for refunds.
  • For our interstate and regional Drive participants, the FightMND team will be on hand to help source accommodation for Thursday night so please get in touch at 1800 344 486 at or via [email protected].

EVENT

Where: The Albion Rooftop and Bar – 172 York Street, South Melbourne VIC

When: From 5pm onwards, Thursday 13 October

Dress code: Please wear your Daniher’s Drive polo

Entertainment, drinks and canapes provided.

Coles Express fuel vouchers will also be handed out to Team Captains

 

Day 2 – Friday 14 October

  • Changes to Day 1 also means that we won’t be Bright for breakfast on Day 2.
  • On Friday, Daniher’s Drive will officially depart for Lakes Entrance from Melbourne, via Yarragon and Bruthen.
  • We’ll come together as a convoy in Yarragon at 9:30am before departing at 10am for lunch in Bruthen where we will rejoin the original Drive route.

We appreciate that many will be disappointed with these changes, especially those communities in the North East who have been eagerly awaiting our arrival.

However, given the current emergency weather warnings, we cannot risk the health and safety of our Drive family. It’s also important that we avoid putting unnecessary pressure on regional emergency services.

Despite some last-minute tweaks, I have absolute faith that we will rally and the Drive will be one to remember.

In the meantime, stay safe (stay dry) and we’ll see you all on Thursday night for an epic/unexpected way to start the Drive.

As Nealo says – play on!

‘Devastated’ Neale ruled out of Daniher Drive

Written by Neale himself, here’s a humorous update on his health and attendance on the Drive.

As you know, the four-day, Daniher’s Drive is like a grand final for me.

Like you, it is the culmination of a year’s hard work fundraising, shaking the can, and hitting your mates up to buy raffle tickets.

So I have been busy, doing the hard yards.  I thought I was a real contributor, a real team player.

At no stage did l think that my spot in the grand final Drive event was in jeopardy.

But, last Friday out of the blue, I was told to meet with the boss (my wife Jan) the following day.

I bounced into the meeting, fully expecting some encouraging words, maybe some final instructions on my role on the Drive.

Well, was I in for a surprise?

Jan’s first words were ‘Sorry, Neale you have been ruled out.

She continued ‘Basically, it is a fitness issue. We just can’t carry any passengers.  Unless you can be up and going from early morning to late at night, three days in a row… well you know we don’t want a Sam Reid Sydney Swans moment, we all know how that ended and we don’t want to go there!’

Well, it was ruthless from the boss.

I pleaded my case. Gave her my saddest puppy eye look but to no avail. ‘Team first’ was all she said as she swiveled, walked out and the meeting came to an abrupt end.

Well, I was gutted. (I totally ignored the fact that I currently need all-day carers and specialized equipment that doesn’t travel well).

I immediately had a dummy spit.

I locked myself in my room and didn’t speak to anyone for two days.

It wasn’t until my three-year-old granddaughter Rosie asked “Why is poppy locking himself in his room?”  that I started to think maybe I wasn’t being a great role model and I started to pull myself together.

The good news is I have clearance from the boss to be in the rooms before the big event. So I will see you all at the MCG from 7am, Thursday 13 October to see you off. I also plan to be in the rooms to celebrate the famous victory, Halloween party night, Saturday 15 October. It should be great fun. Jan and I already have our costumes sorted.

Until then, I’ll keep my chin up and… play on!

 

Two new research discoveries lead to promising MND treatments

One of the great challenges in discovering effective treatments for MND (also known as ALS) is that each person’s experience differs and the progression of the disease is unique for each individual.  

While there is no known cure for MND, available treatments can have varied results in reducing the impact of the disease. Treatments for MND essentially focus on retaining function, slowing disease progression and improving quality of life.  

The drug Riluzole, which blocks the release of glutamate, is the only available treatment for MND in Australia, and is reported to extend a person’s life by an average of about three months. 

In most cases, we do not know what causes or triggers MND. Researchers believe the combination of a person’s genetics, environment and lifestyle that leads to the development of MND. This combination may affect people differently, meaning that any single treatment for MND is unlikely to be effective for everyone, and this is why ongoing research and funding remain critical.  

Research remains our best weapon against the Beast, with mounting confidence in developing promising treatments for MND provided by two new and research discoveries.  

An extended clinical trial for the drug Tofersen shows promise in slowing MND progression 

Researchers investigating the effectiveness of the drug Tofersen in people with familial MND have found it can slow its progression if taken over a period of 12 months.  

The trial investigated the effects of Tofersen in 108 people with MND known to have the faulty SOD1 gene, which is thought to account for around 2 percent of all cases of the disease.  

Tofersen is a type of potential treatment known as an antisense oligonucleotide (ASO) therapy that targets a specific genetic mutation that causes MND. Tofersen has been designed to work by stopping the production of abnormal SOD1 protein that is toxic to motor neurons. Recently published in the New England Journal of Medicine, researchers reported that Tofersen reduced the amount of SOD1 protein as well as a protein called neurofilament which is biomarker of MND progression. They also reported a notable reduction in the rate of decline in mobility and lung function in a person living with MND, after taking the drug for a year.  

These results give mounting confidence that Tofersen is having both a biological and a beneficial effect in people living with SOD1 MND.  

The drug has not yet been approved for use as a treatment for MND anywhere in the world. It is under review by the FDA in the USA and there is an early access program in the UK. In Australia, all medicines must be approved for sale by the Therapeutic Goods Administration (TGA). 

For more information, check out this summary from the MND Association UK.

 

FDA approves new treatment for ALS/MND 

Overnight, the US Food and Drug Administration announced it has approved the therapy RELYVRIO™ (sodium phenylbutyrate and taurursodiol), developed by Amylyx, for the treatment of adults with amyotrophic lateral sclerosis (ALS).  

RELYVRIO™, previously known as AMX0035, is an oral, fixed-dose combination therapy that slowed the loss of physical function in people living with ALS in a randomized, placebo-controlled clinical trial. 

The approval of RELYVRIO is based on data from CENTAUR, a multicenter Phase 2 clinical trial in 137 participants with ALS. Detailed data from CENTAUR were published in the New England Journal of Medicine, Muscle & Nerve, and the Journal of Neurology, Neurosurgery, and Psychiatry. 

“Any time we have a new tool to slow the progression of this disease represents an important milestone in how we battle ALS. The published data on both function and survival in a randomized trial – and what this means for people living with ALS – are a step forward for the ALS community,” said Sabrina Paganoni, M.D., Ph.D., principal investigator of the CENTAUR trial, investigator at the Sean M. Healey & AMG Center for ALS at Massachusetts General Hospital, and Associate Professor of Physical Medicine and Rehabilitation at Harvard Medical School and Spaulding Rehabilitation Hospital. 

At present, RELYVRIO is now approved as a treatment for MND in the US and Canada.  

The FDA approval is significant for the MND community and adds to the growing momentum and progress we’re seeing in MND research around the world. This is the first new treatment since Edaravone was approved in 2017 (available in Japan, South Korea, the U.S, Canada, Switzerland, and China) and Riluzole (available in Australia) was approved in 1995.  

For more information, see the Amylyx press release and FDA statement 

You can also read MND Australia’s statement here.  

When it comes to MND treatment or access to clinical trials, FightMND recommends that you speak to your health care professional.  

 

FightMND investment in research  

We know that we will need many treatments to end MND and our job isn’t done until we rid the world of MND.  

With every project we fund, we are learning more about the Beast and how best to fight it.  

Since 2014, FightMND has invested more than $55.9 million into cutting-edge research in Australia and overseas, to find effective treatments or a cure – including 12 clinical trials and 22 drug development projects. We are also investing in targeted research that looks to uncover the causes and triggers of MND. 

For more about FightMND’s investment and impact, please visit https://fightmnd.org.au/cure/