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Firies Climb for Motor Neurone Disease

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25.01.2022 #1504forMND was a community event through and through this year. Here are some of the researchers from Macquarie University Motor Neurone Disease Research Centre who are the ones working tirelessly to find a cure

25.01.2022 Sad news shared with us today from @als - We are deeply saddened to share that Pat Quinn, co-founder of the ALS (MND) Ice Bucket Challenge passed away at the age of 37. Pat was diagnosed with ALS in 2013 and went on to help popularize the greatest social media campaign in history. The #IceBucketchallenge dramatically accelerated the fight against ALS, leading to new research discoveries, expansion of care for people with ALS, and greater investment by the government in ALS r...esearch. Pat continued to raise awareness and funds for the fight against ALS and our thoughts are with the Quinn family and all of his friends and supporters. Pat was loved by many of us within the ALS community and around the world. He will be missed, but he will continue to inspire us until we have a world without ALS. You can help us continue that fight by supporting someone who’s doing #1504forMND or at https://1504.firiesclimbformnd.org.au//do/beneficiary/1533

25.01.2022 To mark the last day of #1504forMND, check out this bunch of legends! Big thanks to Cam and Jess who organised the Mt Tomaree climb over the sweltering hot weekend . These numbers just speak for themselves: 18 athletes 102 total laps... 204 KMs 16.2 km that's Everest, twice! 22100 calories (148 schooners) $2000+ raised so far 20+ conversations with the public, raising awareness. It’s never too late to show your support to those who put their bodies on the line for MND. https://1504.firiesclimbformnd.org.au//do/beneficiary/1533

25.01.2022 Wishing the king of Dad jokes a very happy birthday May you be showered upon with birthday love (or at least more than what you almost where here ) #firiesclimbformnd #happybirthday

25.01.2022 Who else feels this way about lockdown? Sending strength and a big thank you to those making the sacrifice by staying inside to keep everyone safe. You got this #screamifyouwantto #thankyou

24.01.2022 Our friends are hosting a virtual gig tonight to raise money for MND NSW. Theyre going live from 8pm tonight and are accepting requests! Check it out

24.01.2022 Big thanks to Jacob Boddy for capturing the night and congratulations to all our winners.

23.01.2022 Repost @frnsw_411_oberon Today (4 May) is St Florians Day, also known as International Firefighters Day. St Florian is the patron saint of firefighters, and today is a perfect opportunity to pay tribute to the men and women who serve in times of fire and emergency. At FRNSW, we remember colleagues who lost their lives in the line of duty, as well as thank firefighters who risk their lives every day to make ours safer.

23.01.2022 Looks like the Bunnings sausage sizzle will be back soon! We are very excited that many a firies favourite fund raising activity, and many Aussies fave snack, might be back on the table (sorry VIC) Whilst we wont be climbing the tower this year, we can still continue the fight against MND. Stay tuned for more info on how we can continue the fight together. ... Keep up to date on our spanking new website www.firiesclimbformnd.org.au Happy eating!

23.01.2022 We don't know about you but we'd love to see some fancy dress push ups for #1504formnd. Thanks for getting involved John!

22.01.2022 They made it!! These kids have got some pretty big tickets. Well done to Josie, Ben and Ebs for a solid effort climbing Sublime Point with Sarah Tobin and Ness to raise funds and awareness for MND research and in memory of Chloe Saxby. Shout out to to Alana Jayne, Tash Ferguson, Maria Lucia Londoño, Liz Smith, Amanda Schipp, and Alison Sturt for getting behind these very awesome people.

21.01.2022 We have a lot of love for @TeamzuluforMND did you know in 2018 they raised over $40,000? Andrew (pictured in the middle) was an ambassador who was diagnosed with MND in 2015 and along with his wife, Wendy, made and sold candles as part of the teams fundraising efforts. Absolute machines . #firiesclimbformnd #mnd #als #motorneuronedisease

20.01.2022 CLIMB UPDATE Following an extensive review into ways the physical Firies Climb for MND event could be re-worked to ensure a covid-safe event, the decision has ultimately been made to not proceed with this year’s physical climb event. This decision has not been made lightly, and it with a heavy heart that we advise of this outcome. Unfortunately, as our event involves the gathering of a large number of people in a very confined space, until the incidences of sporadic community... outbreaks has ceased, the risk of bringing together so many essential workers is too great for all stakeholders involved. Over the past 6 years, the firies climb has seen such an incredible community of people come together to help end MND. The people behind this event have showcased examples of what it truly means to be inspirational, and the examples of dedication, kindness, and camaraderie are countless. We cannot wait to bring this event back once it’s safe to do so, and to bring this incredible community back together for a physical event again. However, we aren’t going to be resting on our laurels - the #1504forMND virtual event will go ahead this year bigger and better than ever, and will launch in August until the end of the year. It will also include expanded fundraising options in light of the physical event not going ahead. We would encourage as many people as possible to participate in the virtual event to continue supporting desperately needed MND research and clinical care. Stay tuned for more details on this including covid-safe guidelines regarding the event. In the mean-time, we do have an update around how the funds raised form previous years are being put towards critical MND research. We are so pleased to let you know that the funds raised from previous climbs have contributed towards implementing a brand new clinical trial. To hear more about this, Prof Dom Rowe and the research team are holding a public webinar on Thursday 29 April register here to tune in: https://event.mq.edu.au/mnd-webinar/registration Thank you once again to the incredible community behind this event, we can’t wait to climb the tower, shake buckets and raise incredible amounts of money for MND research with you all again in the hopefully not-too-distant future.

19.01.2022 MND can be difficult to get your head around, especially if youre a kid. Our friends over at MND Australia have created this amazing resource to help kids understand what it is and prepare them for changes in the future - https://mndbuddies.mndassociation.org/

19.01.2022 Wishing all the Mums out there a very special Mothers Day. How lucky we are to have them in our lives. For those remembering their Mums on this day, especially those lost to MND, we are thinking of you. We also send love to those especially acknowledge the super Mums that are currently battling MND. ... Thank you to Mums everywhere for all that you do! #MothersDay

19.01.2022 As with many things "dont ignore the problem because there isnt yet a solution." Remember, its not incurable, its under funded. #GlobalMNDAwarenessDay

19.01.2022 Today marks the winter solstice, a turning point in the year seen as the start of a new season of hope. Its also Global MND/ALS Awareness Day which gives us the opportunity to increase community awareness and support for #MND. You can help us raise awareness but by liking and sharing this post, visiting the Macquarie University Centre for Motor Neuron Disease Research page or by sharing your MND story with the hashtag #ALSMNDWithoutBorders #mnd #motorneuronedisease #als #firiesclimbformnd

17.01.2022 Wishing everyone a safe and happy Christmas!

17.01.2022 It can be hard for people with MND to explain what its like to live with MND but Bibi (pictured) does so articulately and beautifully. From @bibi_wheelchair_traveller: One of the most difficult and nerve-racking things in ALS is, in my opinion, the constant need to adapt to new physical limits and to cope with the incessant progression of the disease.... One must always adapt to new losses and thus new situations not only physically but also psychologically. It DOESNT look like this: Thats how it will be with your body from now on. Learn to cope with it, because it wont get better, it will stay that way." Sure, even such a situation is certainly not easy to cope with. But: with ALS it will not only not get better or stay the same, but it is a constantly WORSENING condition, it NEVER stops and mostly, depending on the speed of the progression, there isnt even enough time to get used to a current situation. If you have just come to terms with the fact that your thumb has given up its function and (in the best case) you found a way to compensate for various movements, you will notice that the strength in your wrist is slowly failing (this is of course only an example). So again pondering, again compensating, again developing new methods or buying new aids until next loss comes up. Then the whole thing starts all over again. And you never know what the next stage is going to be like or when the next loss will occur or which part of your body will say goodbye... I myself recall situations in which we made sure (e.g. when buying new furniture) that I would retain certain independence or opportunities. This is connected to detailed search and, most of the time, a lot of money that has to be invested and after a few months the situation has changed so much that the special purchase has lost its advantages. Of course: I think everything that allows a patient to somehow carry out an activity independently for a longer period of time even if its only for a few weeks is absolutely welcome. But one should never underestimate this frustration that comes with having to start all over again with worse conditions every day. A thought that may help: Compared to yesterday, Im always the weakest today. Compared to tomorrow, Im always as strong today as I will never be again

17.01.2022 We love it when our climbers share their climb day photos with us This is climber Ben Shrader and Phil Camden who is holding his own floor dedication that says I may have MND but MND doesnt have me. If anyone else has photos theyd like to share, send us a message or tag us in the photo.

16.01.2022 "The circle of my life is smaller, but, filled with love, is still big enough. I love my life. I am hungry for more." - Dr Kirsten Harley, living with MND since 2013 and loving life. Ever wondered what its like to live with MND? From diagnosis to sharing her decision to keep living with MND, Dr Kirsten Harley articulately and humorously shares her experiences. For those who have MND and those that know someone who has it, we recommend giving this blog a read. ... Thanks for sharing your MND journey, your familys experiences, and cat photos with us, Kirsten Read her blog here: https://kirstenharleymnd.home.blog/author/drkirstenharley/

15.01.2022 Youre invited! The experts at Macquarie University Motor Neurone Disease Research Centre are hosting a webinar on Wednesday 26 August 2020 at 6pm - 7.30pm AEST Register here: https://event.mq.edu.au/world-witho/registration//Register Professor Dominic Rowe, Professor Ian Blair and Professor Julie Atkin will discuss some of the Centres breakthrough discoveries to understand MND, and the new potential drugs in development. You will hear updates on two clinical trials, inclu...ding the CuATSM trial and the Lighthouse Trial, and discuss genetic factors that can influence MND. Youll also get to meet a patient who is living with MND and hear the story of their experience. They will conclude with a Q&A including an opportunity to hear from researchers across the MND Research Centre. Their vision is a world without MND. Their mission is to provide world-class care for people living with MND and to develop new effective treatments for this devastating disease.

15.01.2022 https://1504.firiesclimbformnd.org.au//GavinClifton-3535656 Massive effort from the crew at Wentworth falls and their community. A solid crew there today climbing with them and raising nearly $5k for MND. Still time to support these guys and help them get to their target. Donate to the link above.

14.01.2022 In 2019 our incredible Firies raised our highest amount in a single year - $849,855 - for motor neurone disease research. The tireless work of our climbers means that Macquarie University Motor Neurone Disease Research Centre can continue their research into finding a cure for MND. So, thank you not only to our Firies but your friends, family, and community for their donations and support mentally, emotionally, and physically (those Bunnings BBQs dont run themselves).

14.01.2022 Couldnt have said it better ourselves

13.01.2022 New website. Who dis? Some of you may have noticed our website - www.firiesclimbformnd.org.au - has been down for a while but were baaaack! Our friends over at GoFundraise helped us give it a wee facelift, we hope you like it (we know we do ) Once we nail down some dates, it will be THE go to place for climbers to register, donators to show their support, volunteers to offer a helping hand and a place to keep up to date with all things Firies Climb.

12.01.2022 The health and well being of our community is always our top priority so weve made the difficult decision to postpone this years Firies Climb for MND until 2021. Why are we postponing? With the prolonged bushfire season and unfolding COVID-19 situation, we feel that this is the most responsible course of action. During this time, the Macquarie University Centre for MND Research will continue using the funds weve raised to provide the best possible support and care to patie...nts living with MND and their families. When is the Climb in 2021? The dedicated volunteers on the Firies Climb Committee are currently working away on the next climb. Well be releasing details about the 2021 climb including relevant dates here on Facebook and Instagram (@firiesclimbformnd). Until our next Climb, we encourage you to continue training and helping us raise awareness for MND. Thank you for your understanding and ongoing support. Wishing you a safe and healthy 2020! The Firies Climb for MND Committee

12.01.2022 Macquarie cant host their regular gala this year so are doing something different instead. Cast your vote to let them know how youd like to experience it and show your support

12.01.2022 While there is currently no treatment or cure for #MND, with every climb weve helped the researchers learn more and more. Were not giving up.

11.01.2022 Watch Kevin, diagnosed with ALS in early 2018, and the Swan family find the beauty in the everyday chaos of living with ALS (also known as MND here in Australia).

11.01.2022 Throughout his career, Lou Gehrig was a symbol of indestructibility the iron man of baseball. This same strength carried on even after ALS (also known as MND) robbed him of his life. In his farewell speech at Yankee Stadium on July 4, 1939, Lou Gehrig called himself the luckiest man on the face of the earth. He wasnt thinking of himself, though. He was thanking those who had helped him in life. He was helping his family, his friends, and his fans get through the ordeal of his illness. The letters he wrote to his doctor showed that Gehrig did the same thing in private. He showed no self-pity, no denial, only grace." -Jonathan Eig, Lou Gehrig biographer. #ALS #LouGehrig #mnd #motorneuronedisease #LouGehrigsDisease Repost @als

10.01.2022 Today marks the first day of MND week. Its a week dedicated to raising the awareness of motor neurone disease. To kick it off, wed like to share this poem that describes the impact MND can have on a family but also offers hope for the future.

10.01.2022 For our next climb, we were thinking of including a new awards category - fastest climber with heaviest kit. To be eligible, youd need to make sure you pick up the ones marked very very heavy."

10.01.2022 A beautiful story about a loving man and his family affected by MND. "...he’d tear up every time he had to tell another friend or family member. Because he knew how much we’d hurt. It’s such a devastating disease. It’s really painful to watch someone we love so much go through this."

09.01.2022 No other year in recent history has tested us as a country quite like 2020. In the year of fires, floods, cyclones, hailstorms and even a pandemic, the incredible work of our First Responders, both paid and volunteers, has truly been highlighted. On Australias first #ThankAFirstResponder Day, we want to thank those who tirelessly protect, defend and care for our communities. We truly appreciate your dedication and professionalism throughout these difficult times. Visit www.thankafirstresponder.com.au to view all of the messages of appreciation from around the country. #TAFRD #thankafirstresponder

09.01.2022 Congrats to Brentan Partridge and Ben Smith for their #1504forMND They rode 150.4km from Woy Woy to Nelson Bay. Thanks for putting your bodies on the line to help raise awareness for MND

07.01.2022 @duckpancake smashed out a sneaky 5k with the impressive @mutha.runner crew. Slowly but surely she’s reaching that goal of #1504forMND.

07.01.2022 It is with sadness that we share that LFF Robert Bushy Bushnell has passed away after a 3 year battle with MND. Bushy was a much loved mentor, workmate, and leader to his fellow firies and a loved member of his Tasmanian community. Youll be missed mate

06.01.2022 Love hearing updates on research! Learn more about it below.

06.01.2022 While the Climb is an event for firies, in 2019 we bent the rules a little for Dr Marco Morsch from Macquarie University. Why? Because Marco has dedicated the last 10 years of his professional life to biomedical sciences, particularly #MND. He also leads a team of researchers focussed on understanding some of the fundamental mechanisms of MND. Hes been a spectator of the Climb for years so we were honoured to have him climb as an honourary firie (and he smashed his $1504 fu...ndraising target to boot). Our fundraising efforts over the last few years help researchers like Marco and his team continue to unravel the mystery that is MND. Its a hard fight but in the words of Marco - We will not stop chipping away at that demon thats called MND. Thank you Marco (You can learn more about Marcos work with Macquarie University Motor Neurone Disease Research Centre here - https://researchers.mq.edu.au/en/persons/marco-morsch)

06.01.2022 Just wanted to remind you that some of the MND experts at Macquarie University Motor Neurone Disease Research Centre are hosting a webinar tomorrow night. Register here: https://event.mq.edu.au/world-witho/registration//Register Professor Dominic Rowe, Professor Ian Blair and Professor Julie Atkin (all pictured) will discuss some of the Centres breakthrough discoveries to understand MND, and the new potential drugs in development. You will hear updates on two clinical tria...ls, including the CuATSM trial and the Lighthouse Trial, and discuss genetic factors that can influence MND. Plus, meet a patient who is living with MND and hear the story of their experience. They will conclude with a Q&A including an opportunity to hear from researchers across the MND Research Centre. Their vision is a world without MND. Their mission is to provide world-class care for people living with MND and to develop new effective treatments for this devastating disease.

05.01.2022 Crushing on this ray of sunshine today (and honestly, most days). This is Lauren. As smart as she is helpful, shes come on board this year as part of our Climb Committee. Welcome to the Crew, Lauren were so lucky to have you and all those smarts #firiecrushfriday Jacob Boddy @firiesclimbformnd #firiesclimbformnd

05.01.2022 On a scale of firie on the left to firie on the right, how are you feeling as we head into another weekend inside? Emoji or GIF responses encouraged. #houseitgoing #isolonley #couchcouture #firiesclimbformnd #firefighters Jacob Boddy

04.01.2022 Today marks the second anniversary of Adams passing. We are thinking of Adam, his family and friends, and all those who knew and loved him. What a man and what a legacy he has left! Adam always spoke so well about his experience living with MND. Adams positivity and approach to life continues to inspire us. We miss you mate

04.01.2022 Firies from Wentworth Falls are tackling the gruelling (900) Furber steps as part of their #1504forMND fundraising efforts. You can donate to their fundraising here: https://1504.firiesclimbformnd.org.au//GavinClifton-3535656... Gavin Clifton is aiming to set a new record by climbing the stairs 7 times in a single day. You can hear Gav talking about the challenge, and the achievements of the firies climb community in the brilliant interview on the Ray Hadley morning show this week. https://www.2gb.com/firies-step-up-fundraising-efforts-for/

02.01.2022 While we might not be climbing this year, thats not stopping our firies from keeping up with their training. Shout out to @lukehepworth.com.au who managed to complete the 110 floors of the Firies challenge otherwise know as the 9/11 Memorial stair climb. Repost: @lukehepworth.com.au

02.01.2022 Fire and Rescue NSW couldnt have said it better... tag your favourite Karen This is our Karen. Stationed at busy Station 073 Yennora, our Karen doesnt need to be told to wear her mask and the only video she is in at Bunnings is when she is fundraising for us and the only time she demands to speak to the manager is to compliment them. We love our #Karen and all the wonderful Karens we serve in the community. #repost

01.01.2022 Just because the world feels like its on hold, doesnt mean the fight against MND is

01.01.2022 GoFundraise is our team behind the scenes that help us do what we do. Each year we task them with something they haven't done before and each year they go above and beyond - this year is no different. They helped us bring our virtual staircase to life to give us an opportunity to continue in the tradition of honouring those with MND. We can't thank you enough. To dedicate a step, click here https://1504.firiesclimbformnd.org.au/cms/view