Last year’s ‘Firies Climb for MND’ raised over $850k to support clinical trials at the University’s Centre for Motor Neuron Disease Research. Over $3 million has been raised since the Firies Climb for MND began in 2015, with the funds having supported two clinical trials, with a further fully-funded trial currently in the early stages of development.

^{Pro Vice-Chancellor (Higher Degree Research) Professor Simon Handley is among the Macquarie staff that have tackled the 1504 Sydney Tower Eye steps in full firefighting kit.}

With a physical tower climb off the cards this year, the campaign’s focus has turned to what the firefighters – and us mere mortals – can do to support MND research at home.

The #1504forMND campaign calls on supporters to:

1. Register their support (the first 400 to register get a supporter t-shirt)
2. Choose an activity related to the number 1504 (cycle 1504km, run 15.4km, walk for 150.4 minutes etc).
3. Nominate three friends to take the challenge and raise funds and awareness for MND.

Participants can also dedicate a virtual step to honour someone that has been affected by MND.

The #1504forMND challenge runs through November and is open to anyone. You can follow the challenge on Facebook or Instagram.

Register, make a donation, or dedicate a step at firiesclimbformnd.org.au

They say the apple doesn’t fall far from the tree, and at Macquarie you’ll find some wonderful examples of researchers who have passed on an insatiable pursuit of knowledge and discovery to their own children, creating multi-generational academic families.

With celebrated neuroscientist Professor Gilles Guillemin for a parent, it’s not surprising that Tristan Guillemin developed a keen interest in science very early on. But it wasn’t in his father’s lab  that Tristan got his career inspiration.

“From the age of five I’ve been going out diving and snorkelling and fishing with dad and my brother Lucas,” says Tristan. “It’s a big part of why I wanted to become a marine biologist.”

While Gilles continues to be at the forefront of his field – recently being awarded a National Order of Merit in home country France for his 30-plus year contribution to neurodegenerative disease research – Tristan has been kicking goals of his own in the completion of his Master of Research in the Department of Biological Sciences, where he has been studying parasites living on different species of marlin.

Having won awards at each of his first two scientific conferences – including best graphical abstract at the Australian Society for Fish Biology Conference in October ­– Tristan will embark on the first year of his PhD at Macquarie next year, with a determination to bring a greater knowledge to those invested in the health of our oceans.

“I’m a big believer in the fact that your science is only as good as the number of people that it reaches,” Tristan says. “Fishermen are some of the most invested people when it comes to marine health, but not enough of our scientific research is communicated to them. I want to change that.”

Tristan’s drive for growing scientific knowledge is something he shares with his father, who is a lead researcher at the Macquarie University Centre for Motor Neuron Disease Research.

Gilles’ team broke new international ground following the discovery of the first blood biomarker – a chemical identifier in the blood – for multiple sclerosis (MS), which saw them recognised as Eureka Prize finalists in 2017.  A prognostic kit is currently in the final stage of development by a French biotech company, whereby clinicians will be able to determine the type of MS a patient has within 24 hours and adapt their treatment accordingly.

One of Gilles’ current research projects is closer to Tristan’s own line of work, with an international research collaboration looking into the biotoxins found in cyanobacteria (commonly known as blue-green algae) as a potential trigger for MND.

Gilles and his team, together with the University’s Neurodegenerative Diseases Biobank, are assessing samples from people living in MND hotspots such as the Riverina in regional NSW, which are prone to frequent algal blooms as well as agricultural pollutants such as pesticides and metals.

So, will father and son scientists ever officially collaborate on a research project?

Not likely, says Tristan. While he deeply admires his dad’s work and is open to the idea of collaboration, he prefers researching fish rather than humans.

“Human science, and dealing with people’s pain, is a lot more stressful for me,” Tristan says. “It pulls too much on my heart strings.”

Juliette Jones is 14.

Three years ago, she lost her grandfather to motor neurone disease (MND), a condition that causes the death of cells in the spinal cord that control functions including speaking, swallowing and, ultimately, breathing.

In most cases, it is fatal within two to four years of diagnosis.

When her grandfather died, the then 11-year-old started raising funds for research into a cure for the condition.

“I couldn’t believe there was no cure or effective treatment, so I decided I wasn’t going to sit by and do nothing,” Juliette says.

“I started my own business called CSJ leMoNaiD – C for my mum Claudia, S for my grandfather Sam and J is for me, Juliette – selling a range of products made from lemons at my local market.”

In fact, Juliette’s business is so successful she’s presented the Macquarie University’s MND Research Centre with $36,000: a cheque for $33,000 which she promptly topped up, on the spot, with a further $3000.

“It’s been a tough two years working to help save people with MND,” Juliette said at the presentation. “It’s taught me so much about life in general and pretty much changed my whole life.”

In gratefully accepting the donation, Macquarie University neurologist, Professor Dominic Rowe AM described Juliette’s efforts as “herculean.”

“Finding a cure for MND is a marathon, not a sprint,” Professor Rowe said. “People bounce out of bed each day to fix the disease, because it can be fixed. But we can do our work only through the help and enthusiasm of fundraisers like Juliette and leMoNaiD. Indeed, our team can take a lesson from their hope, focus, energy and tenacity.”

Professor Rowe said the University currently is undertaking two world-first trials designed to significantly prolong the survival of MND sufferers, potentially by “thousands of a percent.”

Juliette, who describes the CSJ team as “warriors fighting against a disease that is really scary”, says she wants to stop MND in its tracks through the “#powerofsour”, and plans to continue contributing her business profits to the research.

You can help support the cause by purchasing leMoNaiD at the campus store, library or online, with all profits going to MND research at Macquarie. For those who’d like to taste-test,  there’ll be a pop-up stall by the library on Thursday, May 4 from 10 to 2pm.

The day was filled will great energy with more than 440 firefighters with their families, members of the public, patients and volunteers coming together in the fundraising spirit and creating great atmosphere in the heart of the city.

Channel 9 news covered the event, as well as the Daily Telegraph, and fundraising teams also generated interest with their local papers in the lead up to event.  

The funds raised with go directly to the MND Research Centre, which is the largest MND research facility in Australia and currently employs 40 researchers and 12 clinicians involved in the research effort.

Last year’s inaugural fundraising climb saw 165 firefighters from throughout New South Wales raise more than $180,000 thanks to overwhelming support from the firefighting community and the general public.

In 2015 Macquarie University and Fire and Rescue NSW began a partnership to launch Firefighters Climb for Motor Neurone Disease, which raises vital funds for MND research at Macquarie University.

Last year’s inaugural event saw 165 firefighters from throughout New South Wales ascend the Sydney Tower Eye wearing their full firefighting kit.

Each firefighter was sponsored by family, friends and the community, and more than $180,000 was raised to support the cause.

Firefighters Climb for MND on Vimeo.

Project founder and NSW Fire and Rescue firefighter Matt Pridham says the 2016 tower run promises to be even bigger. This year there are more than 400 firefighters from around the world coming to take part, each one doing their part and fundraising in their communities.

“It took 18 months to get the event off the ground, but now it has legs of its own and is growing at an incredible rate. It fills me with pride to see my fellow firefighters doing this amazing work in the community. I believe firefighters just want to help with whatever is happening. They want to be there to support their community any way they can,” Matt says.

With one month left until the tower run, the fundraising tally is currently sitting at nearly $221,000 with more than 440 firefighters signed up.

You can sponsor a firefighter or even take part in #1504forMND, a challenge to climb 1504 stairs (the same as the Sydney Tower Eye) over the course of one day to help find the next breakthrough in MND research.

An international study led by Dr Kelly Williams and Associate Professor Ian Blair from the Department of Biomedical Sciences in the Faculty of Medicine and Health Sciences has linked the cause of two seemingly unrelated diseases: motor neurone disease (MND) and frontotemporal dementia.

The recently-released research was published in Nature Communications, and featured on Channel 10 news and Channel 9 news nationally.

Dr Williams and Associate Professor Blair identified variations in a gene called CCNF in a discovery that has significant implications for further studies into the cause of both conditions as well as research into patient treatments.

The gene variations were initially found in some patients with the inherited form of the diseases, but were also subsequently found in some with the ‘sporadic’ forms, which are those without a family history of these diseases.

While there was an earlier discovery of another gene implicated in causing these diseases, Macquarie’s researchers were able to extend the study by identifying a common pathway by which CCNF mutations seem to cause both diseases.

“A hallmark feature of most MND and frontotemporal dementia patients is the presence of abnormal proteins in the dying nerves. A functioning CCNF gene assists in ridding neurones, or nerves, of abnormal or excess proteins. Our research found that the mutations in the gene appear to disrupt this process causing nerve death,” said Associate Professor Blair.

Gene variations in CCNF were found in patients from across the world including Australia, Canada, Italy, Spain, Japan, the United States and United Kingdom, with implications for global populations and diagnostics around the world.

“While a relatively small number of patients who have MND or frontotemporal dementia have this abnormal gene, this research points to a pathway of nerve death that may be common among many, if not most patients,” said Associate Professor Blair.

This research is an important step that represents another ‘smoking gun’ to help develop and test therapies and add to diagnostic regimes for these diseases and to the bank of knowledge about their biology.

“We can use this research to replicate the disease in a lab environment to explore the occurrence in both ‘inherited’ and sporadic forms, which will assist us in identifying potential treatments to slow disease progression, and further down the line, find cures for both,’ said Dr Williams.