This October, 450 people will continuously pedal 17 spin bikes on the Glenelg Foreshore for a consecutive 27 hours to help find a cure for Motor Neurone Disease (MND).

Now in its third year, the Sister Love 27-Hour Spin event is part of FightMND’s national 27 Challenge (27 Sep – 27 Nov) campaign where people across Australia are encouraged to set a physical activity challenge that incorporates the number 27 while raising funds for MND research and care.

The average life expectancy of a person living with MND is only 27 months and there is no effective treatment or cure.

Running from 1pm, Saturday 29 October through to 4pm, Sunday 30 October, the Sister Love 27-Hour Spin event will be held at the Glenelg Surf Life Saving Club where 17 teams made up of 27 people will cycle continuously on spin-bikes provided by Studio360 Cycle.

This year’s event is hoping to raise more than $100,000, after raising $93,000 last year.

Sister Love 27 Hour Spin is the brainchild of Bronwyn Watt, who lost her sister to MND in June 2022.

“My sister Jenny was diagnosed with MND in April 2020 and I wanted to do something to raise money to help find a cure,” Bronwyn Watt said.

“While a cure didn’t come in time for my sister, we need to keep raising funds for MND research so that people living with MND have hope,” Bronwyn Watt said.

FightMND CEO Dr. Fiona McIntosh recognized the commitment Bronwyn and everyone taking part and supporting Sister Love 27 Hour Spin.

“It is only through the support of our passionate community fundraisers like Bronwyn – that we can make a meaningful impact in the fight against the Beast that is MND,” Dr. McIntosh said.

“All funds raised through Sister Love 27 Hour Spin will be invested in cutting-edge research to find effective treatments and a cure for MND as well as care initiative to improve the lives of people living with MND.”

“Every dollar counts in the fight against the Beast – so if you can, please show your support for Sister Love 27 Hour Spin or set your own 27 Challenge today.”

Spots are still available for individuals or teams in the Sister Love 27 Hour Spin challenge. For more information or to take part, visit https://www.facebook.com/sisterlove27hourspin/.

To donate and support the event, please visit: https://hub.fightmnd.org.au/27-challenge-2022/sister-love-27-hour-spin-fightmnd

For more information about the FightMND 27 Challenge, please visit: https://27challenge.fightmnd.org.au/. https://www.facebook.com/plugins/video.php?height=314&href=https%3A%2F%2Fwww.facebook.com%2Fsisterlove27hourspin%2Fvideos%2F1308008863277149%2F&show_text=false&width=560&t=0

This clinical trial will investigate the safety and preliminary effectiveness of the newly developed drug mEphA4-Fc in MND patients. After showing the potential for mEphA4-Fc to delay MND disease progression and improve communication between motor neurons in preclinical studies, researchers will now confirm if this drug is safe to use in people living with MND. The phase 1b trial aims to enrol 8 patients at the Royal Brisbane and Women’s hospital.

Prof Perry Bartlett says that the discovery that has had the most impact in his career “was the 1992 finding that the mature brain contains stem cells capable of producing new neurons.”

This opened a new horizon “where repair and recovery of function may be possible in humans.”
Prof Bartlett says that this was further clarified when stem cells were able to be isolated in 2011 and that “subsequent studies have [since] unravelled the role that the production of new neurons play in functions like learning and memory.”
Prof Bartlett and his colleague Emeritus Professor Andrew Boyd discovered that the ephrin receptor A4 (EphA4) was vital for motor neuron development in 1996. Subsequently they “demonstrated that blocking its action was important in repair of motor neurons following spinal cord injuries”

Blocking the EphA4 in MND

With this in mind, Professors Bartlett and Boyd surmised that EphA4 would have an impact on motor neurons in MND. Further studies, completed by themselves, and others, were able to demonstrate that blocking the EphA4 action would indeed be beneficial to the survival of motor neurons for those living with MND.
The molecule developed (which has been granted a patent in the USA) by Prof Bartlett and his team “is unique in that through competitive binding it can block the action of EphA4 for a prolonged period of time, making it suitable for weekly injection into MND patients.”

The Phase 1a trial, also supported by FightMND, is now nearing its final phase and the molecule has proven to be safe and well tolerated. The funds provided by FightMND will allow for extension of the trial for an additional six months, allowing the correct dosage to be determined and further safety and tolerability to be examined.

“We will use a variety of biomarkers and clinical observations to examine whether the treatment has provided some early signs of effectiveness,” said Prof Bartlett.

Data collated from the observations will allow for subsequent trials aimed at the therapeutic treatment of MND.

“Since our studies have shown that EphA4’s action is to damage motor neurons directly,
we would expect, like our animal studies, that blocking this action with EphA4-Fc would result in significant preservation of motor neurons, improve connectivity, and ameliorate the
disease process significantly,” he adds.

An award for service

Prof Bartlett was awarded an Officer of the Order of Australia in 2020, recognising his distinguished service to neuroscience research. He says the award not only recognises his laboratory’s work on understanding brain function, “but also, and more importantly, the service to the community’s well-being through the establishment and output of a world leading research Institute.”

FightMND has invested $1M in this clinical trial. FightMND has provided funding to this project in previous grant rounds: $1M in 2017, and $1M in 2018.

The Big Freeze is back for its seventh year, and we are so excited to make it bigger and better than ever. 

Sales of our iconic blue beanies were launched on Monday 10th May and we’ve already been blown away by the support and enthusiasm of the FightMND Army. 

This year we’re bringing in two main themes for our Big Freeze campaign; ‘Play On’, and ‘V.I.B.’- or ‘Very Important Beanie’.

We have all faced adversity in our lives, and ‘Play On’ speaks to the fact that in these situations we have the choice to surrender, or keep going. As Neale reaches a point in his battle with MND where he is no longer able to lead the charge, we’re asking our Army to take up the mantle and ‘Play On’ in his absence.

While some amazing progress has been made in our search for a cure, the fight is not yet over. MND isn’t finished and so we continue our quest to find a cure, We thank you for continuing to fight alongside us.

Our V.I.B. remains one of the best ways to support our cause – and this year we want to highlight just how important the seemingly simple act of buying a beanie is. They’re more than just something to keep your head warm, they’re a crucial step in raising funds to find treatment, and one day a cure for Motor Neurone Disease. Everyone who buys a V.I.B. is making a tangible difference. 

The beanies can be found at your local Coles, Coles Express or Bunnings – or via our website. Adult size beanies are still just $20, and we’ve also introduced a limited number of children’s beanies – retailing at $17.50 each (available exclusively at fightmnd.org.au). 

Share your beanie shot for a chance to win!

This year we’re holding our beanie competition again, giving you the chance to win AFL Grand Final tickets, as well as $500 vouchers for Coles and Bunnings. 

All you have to do is snap a pic in your ‘Play On’ beanie and share it on Instagram, making sure to tag @fightmnd #VIB #BigFreeze7 #PlayOnBF7 for your chance to win.

FightMND Instagram followers will vote on the winning shot, so be creative and have fun!

GRAND FINAL AFL AUTHORISATION CODE: GFAFL21/22