MND and ME Foundation in Coorparoo, Queensland | Non-profit organisation

MND and ME Foundation

Locality: Coorparoo, Queensland

Phone: +61 7 3394 5333

Address: 5/28 Cavendish Road 4151 Coorparoo, QLD, Australia

Website: http://www.mndandme.com.au

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25.01.2022 Today we emailed everyone in our E-News database an update on the 2019/20 financial year. Below is a summary of that email. If you are not on our database and you would like to be included in future E-Newsletters, please fill out the contact form on our website or email us at [email protected]. 2019/20 Financial Year To Care... Our service provision has grown across the state with 30 Support Coordinators from Cairns to Tweed and inland to Dalby. Our dedicated Spark Neurocare team members are working daily in the community and in peoples homes, helping them navigate the often complex and frustrating support systems. Sarah Durand has now been on staff for 12 months as our Client Services Manager. Her role has grown over that time and the feedback we are getting from families has shown that this position, and in particular Sarah, has been needed as the complexities of dealing with services available grows. Sarah has also been instrumental in smoothly transitioning services through the Covid-19 situation so that client needs are still met. The switch to online support groups has meant increased access for people all over the State as well as guest presenters on relevant service and research subjects. All of our services are 100% funded by corporate support and donations from people just like you in our MND and Me Family. This support is having a daily impact on the lives of Queenslanders. Here are some examples of where your support has helped over the past twelve months: Funding of a Functional Assessment with an OT for a person over the age of 65 - $85/hour. Supply of suction machine - $723 Supply of a falls alarm - $499 Supply of lightweight manual wheelchair - $1530 Ramp installation to access back door of house - $285 Vehicle modification for in car hoist - $2500 Funding for specific set up of eye gaze machine - $500 Helping a child cope with the impending loss of a parent with visits to a psychologist - $135/visit To Cure In the past financial year we funded another $300,000 of MND Research here in Queensland which takes our total contribution to MND Research to over $1.8 million since we were formed 10 years ago. That is something we are very proud of and could not have achieved without the support of the entire MND & Me Family. While our services and research funding have continued, unfortunately our events and fundraising activities have ground to a halt with Covid-19 restrictions. Hopefully restrictions will continue to ease so we can get back to some of our regular events. WE STILL NEED YOUR HELP! To help us continue this work please donate through our webpage www.mndandme.com.au

25.01.2022 Our great friends at NTI have restored another truck and this year instead of a raffle, they are auctioning it to support MND Research with their NTI Research Grant through MND Australia. The beautifully restored 1946 Ford Jailbar will be auctioned off by Pickles at the Australian Trucking Association Live event on 23rd September. Head to their website to find out more and register to bid on this piece of trucking history. https://bit.ly/2Z8IbEr

25.01.2022 Good News Friday Over the past 6 months we have been running the MNDistance Challenge and it has now come to a close. In these crazy Covid times, this challenge has raised over $42,000 to help the Foundation continue to ensure that no Queenslander faces MND alone. A very big Thank You to everyone who has donated but more importantly to those who took on the challenge and rallied their friends and family to support them through donations. We had people on bikes, people running, walking doing pushups, completing triathlons, rowing and swimming. They all nominated to challenge themselves for the MND and Me Foundation. Whats next? Wait for Spring to see what we have in store for you next!

22.01.2022 Fat Rabbit was on parade at Book Week this week at Jordans school. Thank you Jordan for sharing the Fat Rabbit story and with your school and helping to bring Motor Neurone Disease (MND) awareness to your school community. You did Fat Rabbit proud!

21.01.2022 GOOD NEWS FRIDAY This week we have announced that due to the Covid restrictions we will be unable to run our traditional Pies to Pacific ride in 2020. The Good News is that we have joined forces with another event and our band of riders will participate in the Rotary Ride the Range Event in Toowoomba on Sunday 11 October. An email has been sent to all riders who have already registered but if you would like to participate in the event with Team MND and Me, please email us a...t [email protected]. One of the advantages of joining Rotary Ride the Range is that there are many distances you can complete so if the 164km course is too much for you, you can still be a part of the event at a smaller distance. If you would like to participate for Team MND & Me in another distance, please also email [email protected]. Everyone will ride in the MND Team Kit supporting Queenslanders living with MND. We look forward to having a huge Orange Army present on the day to Ride the Range!! See more

20.01.2022 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, including 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.

20.01.2022 On Friday, NTI CEO Tony Clark presented MND researchers with a $200,000 cheque to continue exploring ways to treat the disease. This latest donation was made po...ssible thanks to 1946 Ford Jail Bar auction truck winner, Neville Purtill. It's also thanks to the continued support we receive on the transport industry that NTI has been able to raise almost $534,000 over the past four years for MND research. We look forward to supporting this worthy cause with another restored truck in 2021. See more

20.01.2022 New research suggests that a healthy diet may not be the No.1 priority for people living with motor neurone disease (#MND). Discover more: www.bit.ly/3ltj0po

20.01.2022 Our CEO Jane will be having a chat with Neil Breen on News Talk 4BC 1116 about the Foundation tomorrow morning after 8.30. Listen in for John Hanleys radio debut of Home afterwards!

20.01.2022 GOOD NEWS FRIDAY This afternoon at the QLD MND Centre we are hosting all the Brisbane based MND Researchers for a Shark Tank Research Pitch session. This is a fantastic way for everyone to learn from each other about what they are currently working on and what's next! A very special part of the get together was Tony Clark from National Transport Insurance presenting us with a Big Cheque for $200,000 which supports the NTI MND Research Grant and the Fat Rabbit Research Grant.... Their continued commitment to MND Rearch is unique in Australia and very valued by the researchers who receive their grants! #tocareandtocure #tocareandtocure MND Australia See more

20.01.2022 Just a reminder about our guest speaker via Zoom tomorrow morning. Professor Naomi Wray will be explaining the MiNDAUS Register which is the result of collaboration between MND Specialists, Specialist clinics, MND Associations and Foundations, Patient and Carer advocacy organisations and Researchers. Email [email protected] if you havent been sent the zoom log in details.

20.01.2022 GOOD NEWS FRIDAY The great life of Dan O'Neill has been recognised in a very unique way up in Toowoomba. Dan was an avid bike rider and so following his passing earlier this year, a local mountain bike track has been named the Danomite. This week the Toowoomba Mountain Bike Club and Dan's family installed a Condamine Bell at the top of the track for riders, runners and walkers to ring throughout the park in memory of Dan. ... A very big thank you to Michael from Oakey Creek Ringer for making the bell and plaque but for also donating his fee to the MND and Me Foundation. Karen and the O'Neill family invite everyone to ring the bell at some time and reflect on how happy Dan would be just knowing that you are outdoors!!

19.01.2022 Doing some online shopping for Black Friday? From fashion, gifts, computers, books and travel to groceries and wine. You can find tons of great pressies at Shopnate from +600 famous stores. Sign up from here: https://www.shopnate.com.au/cause/mnd-and-me-foundation Get your Black Friday deals and help us out at the same time at absolutely no extra cost to you.

19.01.2022 The Drive to Cure for 2020 is heading to Bundaberg for the October weekend. Registrations will close next Friday or before if we reach our Covid capacity of 100 people. Dont miss out on this fun filled and extremely educational weekend away. Not only does the trip support people living with MNd but also the local community and tourism operators in Bundaberg who are really doing it tough at the moment. Register here: https://events.mndandme.com.au/events/17/drive-to-cure-2020

18.01.2022 This week is Disability Action Week with the theme of Access-ability making things better for everyone With this in mind we would like to highlight this initiative of Moreton Bay Regional Council to outline their Accessible Trails and Pathways. Might be time to check out somewhere different for a change of scenery. https://www.visitmoretonbayregion.com.au//ultimate-accessi

18.01.2022 GOOD NEWS FRIDAY We finally have a community fundraising event being held!! After all these months we are so looking forward to hanging out at The Coorparoo Bowls Club (CBC) on Sunday for their annual Coopers Cup. Come on down and support this local club and the Foundation or if you cant make it you can buy a raffle ticket to win a bucket of booze!! https://www.raffletix.com.au/?ref=7nxm5

18.01.2022 As part of our Thank You Day we had the wonderful team at Deloitte volunteer their time for us on their Impact Day. They spent the day hand writing thank you cards for some people who have supported the MND and Me Foundation this year. A huge thanks to the Deloitte team! #ImpactDayAU

18.01.2022 State of Origin is very different this year with three games over three weeks and the hype and excitement building to the final game here in Brisbane next Wednesday! Would you like to be in the crowd to see the game at Suncorp Stadium on Wednesday 18 November? Here is your chance to win two tickets with all proceeds going to kick start a very special project we have coming up with Origin great Carl Webb. Get your tickets now: https://www.raffletix.com.au?ref=ud6s2

17.01.2022 One of the great ways we receive donations on a daily basis is through individuals setting up Facebook Fundraisers. Unfortunately we do not receive any details of the person who sets them up other than the campaign name they set so we are unable to thank people personally. On our Thank You Day we would like to say thank you to the following for setting up Facebook Fundraisers and making a difference for people living with MND. THANK YOU TO: Wendy, Debra, Daphne, Kendall, Colleen, Denise, Tristan, Jody, Kaylee, Stef, Kelly, Connor, Kate, Jess, KatNSooty, Jeff, Sue, Tom, Jasmin, Butch, Kaye Kylie, Katrina, Jean, Lala and Shane.

17.01.2022 GOOD NEWS FRIDAY Face to face support groups are back!!! Yesterday we had a lovely morning catching up for our first face to face support group since March! So much conversation and information sharing! We are running another session next Tuesday 10 November at Chermside Library from 1 - 3pm. Then our Christmas Support Group will be Thursday 3 December, 10am - 12pm at Qld MND Centre, Coorparoo.

16.01.2022 How amazing would it be to witness the Aurora Australis while in Tassie on our walking trip? You can join us and fund raise to make a difference in February 2021. https://www.abc.net.au//spectacular-aurora-lights/12910840 Email [email protected] for more info on the walk of Freycinet and Bay of Fires National Parks. ... Aurora Adventures See more

16.01.2022 Congratulations to Luke Modini who on Saturday night was crowned Queensland Cruiserweight Champion! Luke has been raising awareness for MND and proudly wears our logo on his boxing kit. We are so lucky to have you in our corner Luke! Thanks Trudy for the pics!!

16.01.2022 GOOD NEWS FRIDAY Even with Covid restrictions, our Queensland MND Researchers have found a way to continue their valuable work. All three researchers have provided us with mid year updates which you can read here: https://www.mndandme.com.au/helping-people/research/ The three named Research grants for 2020 are: The NTI MND Grant: Associate Professor Anthony White, QIMR Berghofer Medical Research Institute Boosting microglia phagocytosis as a therapeutic approach to treat... MND. The Fat Rabbit Grant: Dr Frederik Steyn, University of Queensland Tipping the Scales on MND: Preclinical testing of a compound with multiple actions to slow disease progression in MND The Col Bambrick Grant: Dr Richard Gordon, University of Queensland Targeting inflammasome-driven neuropathology and motor neuron death in MND using a clinically approved cancer drug Fat Rabbit MND Australia nti QIMR Berghofer Medical Research Institute The University of Queensland

16.01.2022 In our support groups there is lots of discussion around medicinal cannabis so this would be an interesting Webinar for people living with MND to join.

15.01.2022 Our good friends at Lord Byron Distillery are continuing the Christmas tradition of the past two years and producing our signature MND and Me Gin for you to order. Only 100 bottle are produced each year so don't miss out on sipping this perfect summer drink on Christmas Day! You can order from their website and tick pick up to collect it here from the Qld MND Centre in mid December. https://www.lordbyrondistillery.com.au//lord-byron-distil/

15.01.2022 Motor Neurone Disease research is a cause very close to our hearts. Thats why in one week, well be auctioning off our beautifully restored 1946 Ford Jailbar in the ATA Live event, with all proceeds going to MND research. Register to bid here: https://bit.ly/2Z8IbEr

15.01.2022 We cant wait until Sunday when we will be having a roll at The Coorparoo Bowls Club (CBC) at their annual Coopers Cup. A huge thanks to Joe Kelly MP for supporting the Foundation at this event.

14.01.2022 This raffle will be drawn on Sunday at 2.30 so don't miss out on your chance to win Jolene!

14.01.2022 GOOD NEWS FRIDAY WOW!! Our amazing Pies to Pacific riders head off from Yatala Pies at 7am tomorrow morning with $198,610 in donations. Wouldn't it be great to start the ride with $200,000 in the tank? Join us at 7am for a Facebook live start as we will see Steve from Gabba Collision Centre sound the horn to get them on their way! To help get them to $200,000, donate here: https://secure.mndandme.com.au/events//pies-to-pacific-2021

14.01.2022 Pies to Pacific/ Ride the Range 2020 Dont miss out on joining Team MND & Me at the Rotary Ride the Range cycling event on Sunday 11 October in Toowoomba. Dont miss out on this amazing cycling event supporting the MND and Me Foundation. There are 6 distances you can choose from between 200km and 59km. The main MND Pack will be cycling the 100Milne distance with a dedicated start for our team. ... If you would like to join us for the ride you will need to register with Ride the Range and then register with us to order your MND and Me cycling kit. Kit orders close at 5pm tomorrow (Wednesday 26 August). Ride the Range Rego: https://ridetherange.org.au/ MND and Me Kit order: https://events.mndandme.com.au/eve//ride-the-range-for-mnd

13.01.2022 Its the moment restoration enthusiasts have been waiting for the opportunity to bid at auction on NTIs restored, custom 1946 Ford Jail Bar. This amazingly restored truck will be up for grabs as part of the Australian Trucking Associations 2020 ATA Live Industry Broadcast Event online auction, open to anyone over the age of 18 in Australia. The live auction will take place next Wednesday 23rd September at 5:30pm AEST. All proceeds from the truck auction will go to the NTI... Research Grant for 2021. You can register to bid here: https://www.pickles.com.au/campaigns/jail-bar #mndresearch #fordjailbar #truckrestorations

13.01.2022 At this time, fundraising is hard for the Foundation but every little bit helps us. At the end of every month we get a lovely email telling us that a deposit has been made into our account from the PayPal Giving fund because of people running Facebook Fundraisers for us. Unfortunately we dont get the details of who has run the fundraiser except for a first name. We would like to thank everyone who continues to hold Facebook Fundraisers to benefit the MND and Me Foundation. ...THANK YOU to Tristian, Jody, Danielle, Sue, Jasmin, Tom, Butch, Kaye, KatNsooty, Kate, Jeff, Jess, Kelly, Kaylee, Stef, Connor and the many others who have all held fundraisers for us during Covid. Whether it is for a special occasion, because you are doing an activity to sponsor or because you would like to remember someone, a Facebook Fundraisier is a very easy way to fund raise. If you would like information on how to set one up, please email us at [email protected]

12.01.2022 So great to support Fight MND and their Big Freeze 7 campaign today. We are all working hard to Fight the Beast!

12.01.2022 Fathers Day Gift Idea #2 - MND&Me Socks! Who doesnt love a pair of socks for Fathers Day and how good will he look in these snazzy socks! You can grab a pair or two here: https://www.mndandme.com.au/product/mnd-socks-2/

12.01.2022 UPDATE on 100km per day for 100 days! Tim is currently sitting at $18,608 with his fundraising for this mammoth effort! He would love to get to $20,000 to make the 100 days really worth the pain and effort he has put in! Can you help him reach his target?? He will be finishing on Sunday so he needs help now to get him over the line! Every donation of $100 or more goes in the draw for this prize pack of 4 cartons of Stone & Wood and MND&Me Merchandise. ... Donate now!!! https://events.mndandme.com.au/my-fundrai//100kms-100-days See more

12.01.2022 GOOD NEWS FRIDAY This week a ceremony was held at St Laurences College to instill their latest Hall of Fame inductees. Along with Sarah, Abbey and Charlie Sullivan, Scotts mother Kathleen, sisters Lenore and Karen and brother Michael were present for the ceremony. A video was shown with a message from Sarah and some of Scotts journey and the printed program for the ceremony included the following: "Scott championed the MND cause, uniting a community, inspiring researcher...s and placing MND and the desperate need to find a cure firmly into the minds of everyday Australians. And through his selflessness, he taught us to be better people, to embrace life and the people around us." The other inductees on the day were: Tony Harrington, Danny Hoyland, Dan Crowley and Cooper Cronk.

11.01.2022 Today is Giving Tuesday and the 1st December so a perfect day to launch our 2020 Christmas Appeal. This year we are raising funds to support Queenslanders living with MND and their families to access funding that either NDIS or My Aged Care will not fund. Meet Russell... "Blue skies, the sound of the surf crashing on the sand and a beautiful view of the ocean beyond the rocky outcrop of the southern end of Miami Beach, on the Gold Coast. A picnic and a family get together, topped off with a stroll along the esplanade, completed our day. "This wouldn’t have been possible without the support of the MND & Me Foundation and their grant that went towards the hiring of a wheelchair accessible vehicle." Russell was diagnosed in April 2018 with early onset bulbar which affects his speech and swallowing. By September that year, Russell was no longer able to speak and relied solely on communicating via an app downloaded on to his mobile. In the last 2 1/2 years his mobility has steadily declined and Russell is completely wheelchair bound. Russell and his wife Veronica live on a small rural property accessible only by a gravel road and using a taxi service is out of the question. Having access and the funds to hire a wheelchair modified vehicle has given Russell independence and opportunities to once again get out into the community and enjoy catching up with family, friends and former work colleagues. Russell has received funding for equipment via the NDIS, however they would not fund a vehicle or rental of a vehicle so Russell could leave his house. That is where our Support Grants come in - to help ease the pressure of living with MND. Please consider a donation to our Christmas Appeal as an alternative Christmas present for someone. Or maybe even set up a regular giving donation each month for all of 2021. You can make a difference in 2021 for people like Russell living with MND. https://secure.mndandme.com.au/donations

11.01.2022 How amazing would this custom sideboard look at your house?? Dont miss out on a ticket! Martin Johnston is raffling off his handcrafted signature piece The Custom Sideboard made from sustainably sourced Tasmanian Oak with 100% of the proceeds to go to the MND and Me Foundation. Raffle drawn Monday Oct 12th... https://www.raffletix.com.au/martinjohnstonraffle

11.01.2022 A great opportunity for anyone with MND interested in MND Research to attend the 2020 virtual symposium.

10.01.2022 Who will you give your #donationdollar to? "The Royal Australian Mint calls it the "donation dollar" a specially made $1 coin that it hopes people will give away. The Mint has begun pressing 25 million of the charitable coins about one for every Australian in a bid to boost the countrys flagging levels of philanthropy. The special coin has a green centre with a gold ripple design, symbolising the ongoing, positive repercussions that each donation can make."

10.01.2022 Pies to Pacific Send Off!

09.01.2022 Congratulations to Dr Shyuan Ngo on being awarded the Charcot Award, funded by the NTI MND Research Grant which is awarded to the highest ranking innovator grant application for 2021. Shu will be investigating MND in space and time: deciphering the spatio-temporal landscape of cell-autonomous and non-cell-autonomous drivers of motor neuron death in MND. Two other research grants are funded by the MND and Me Foundation: The Col Bambrick MND Research Grant has been awarded to... Dr Robert Henderson to investigate a Novel PET Imaging Marker of Astrocytes and Glutamate Reuptake in Brain and Spinal Cord in ALS The Fat Rabbit MND Research Grant has been awarded to Dr Adam Walker for his work in Defining the involvement of ubiquilin-2 in MND. Congratulations to Rob and Adam!! The full list of 2021 MND Australia Research Grants can be found here: https://www.mndresearch.org.au//Late/Research-reports.aspx National Transport Insurance #tocareandtocure #mndandme

09.01.2022 Check out this great holiday video from John ODonoghue showing some of the great places he visited on his recent trip to Cairns. There are some great ideas of places to visit here for people in a wheelchair and dont forget Queensland is open for Queenslanders to travel so get out there and enjoy it! Dont let a wheelchair stop you from exploring new or favourite destinations!

09.01.2022 In July 2021, a team of dedicated adventurers are heading to the Northern Territory on a once-in-a-lifetime trekking adventure to the Larapinta Trail. Renowned as one of Australia’s most premier walking tracks, you’ll follow the trail as it traverses the breathtaking West MacDonnell Mountain Ranges. Surrounded by endless stretches of red desert and ancient bush, you’ll trek well-defined paths, rugged inclines and rolling hills of limestone. With spectacular views of Mount Sonder and Haasts Bluff resting in the distance, you’ll be rewarded with panoramic views of the Outback. https://events.inspiredadventures.com.au//mndandme-larapi/

09.01.2022 The Team MND & Me cycling crew have rolled out with Tim D to finish the final 35km of his 100km per day for 100 days. To put it in perspective- Tim has been on his bike for a minimum of 4 hours every day since the middle of May! Such a huge effort! We will live stream his arrival into the Stone and Wood brewery at approximately 12noon.

08.01.2022 GOOD NEWS FRIDAY Earlier this year we showcased a watercolour painting that Pat Kinsella had painted and donated to our Gala Dinner to be auctioned. Following on from that, we commissioned Pat to create a specific artwork for the MND and Me Foundation. This beautiful artwork has now been turned into cards for everyone to enjoy. Pat Kinsella was diagnosed with MND in 2013. After coming to terms with his diagnosis, he decided he wanted to use what time he had to constructivel...y and positively raise awareness and funds towards MND Research and Run for Pat was born. Over the past 6 years, Pat and his Angels have flown the flag for MND & Me at various running events including the Gold Coast Marathon. In 2019 Pat was dragged along to an art class by one of his Angels and his love of watercolour and art has grown and grown since. The cards are sold in packs of five with envelopes. https://www.mndandme.com.au//pat-kinsella-butterfly-and-c/

08.01.2022 Dont forget to order your Dad some socks for Fathers Day! The order will arrive on Monday ready to be shipped out in time for you to present them to him in bed with a cup of coffee next Sunday! ORDER NOW: https://www.mndandme.com.au/product/mnd-socks-2/

07.01.2022 Ah beautiful Tassie! Fancy yourself in this picture? Act now to secure one of our last remaining spots on our Bay of Fires & Freycinet Tasmania trek supporting ...the MND and ME Foundation next Feb! To book now : https://form.jotform.co/193460362222855 #tasmania #australiatrekking #bayoffires #freycinet #charitytrekking #everyjourneymatters

07.01.2022 We love it when people come up with unique fund raising events and this one was surely unique - a car club running a bush walking challenge!! A huge thanks to ClubMini Queensland for organising the walks and for raising close to $2000 in honour of Russell Albury. We can't wait to see what you organise next year!!

07.01.2022 Disappointed that you missed out on a pair of MND Socks for Fathers Day? Kids didnt get the memo for what you really wanted? We have the solution - jump online and grab a pair for yourself now!! All the best dressed around town will be sporting these snazzy socks: https://www.mndandme.com.au/product/mnd-socks-2/

06.01.2022 Our online support group next Wednesday will feature a very special guest speaker - Professor Naomi Wray. Professor Naomi Wray holds joint appointments at the Institute for Molecular Bioscience (IMB) and the Queensland Brain Institute (QBI) within the University of Queensland. She is a National Health and Medical Research Council (NHMRC) Leadership Fellow and a Fellow of the Australian Academy of Science. Her research focuses on development of quantitative genetics and genom...ics methodology with application to psychiatric and neurological disorders. She plays a key role in the International Psychiatric Genomics Consortium and co-leads the Ice Bucket Challenge funded sporadic ALS Australia systems genomics consortium (SALSA). The online support group will be from 10.00am - 12.00pm and if you would like the Zoom link to join in with us, please email [email protected] Professor Wray will talking with us about the following projects: SALSA-SGC In 2015 Prof Naomi Wray, a specialist in genomics, saw the need to add to the clinical information that was being collected by AMNDR. She foresaw that collecting and analysing genomic information from people affected with motor neurone disease would become a powerful addition to the search for understanding and finding a cure or effective treatment. Prof Wray created the Sporadic ALS Australian systems genomics consortium (SALSA-SGC). As happened with AMNDR, this was funded entirely by donations from the Australian public by funds raised by the Motor Neurone Disease Association of Australia during the ice bucket challenge. Since then, this collection of samples combined with clinical data has formed a very powerful tool for current and future analysis in MND. With the current revival in clinical trial activity supported by FIGHT MND funding, the search for a treatment that will make a difference has been accelerated. MiNDAUS MiNDAUS is an ambitious broad national partnership, funded by the Australian Government National Health and Medical Research Council in 2019, as well as donations, and focuses on people with MND and their carers. It enables healthcare workers, clinicians and researchers to work together to achieve the best outcomes and develop evidence based health policies for people affected by MND. The MiNDAUS platform enables patients to register themselves and maintain up-to-date information about their care and condition. We hope that this will help patients take control of their care, manage and share their own information. People who register can also give permission for their data to be shared with the MiNDAUS Clinical Registry and also to link with SALSA-SCG. There is also the option to link with other established research programs like IPSc (stem cell) study, which is funded by Fight MND. The linkage of this information will provide a powerful tool to investigate many aspects of motor neurone disease and develop evidence-based policies advancing care and breakthroughs in research. See more

05.01.2022 10 more day to go for Tim in his 100km per day for 100 days Challenge and he can smell the finish line now!!! He is getting really close to $20,000 so as an incentive our great supporters at Stone & Wood Brewing have put up an amazing prize to encourage everyone to get behind Tim and get him to his fundraising goal! Everyone who donates $100 or more will go in the draw to win this prize pack of four cartons of Pacific Ale and a MND merch pack! Help him and help us here: https://events.mndandme.com.au/my-fundrai//100kms-100-days

05.01.2022 Just a reminder that the Drive to Cure Registration closes on Friday. If you have nothing to do on the long weekend in October come along with us as we visit: Visit Bundaberg, Queensland Splitters Farm Bundaberg Rum Riverfeast Bundaberg... And many more local farms and attractions. The Drive to Cure was so good in 2019 that most of our attendees have booked again but there are a few spots left if you are keen to join us!! BOOK NOW: https://events.mndandme.com.au/events/17/drive-to-cure-2020 See more

05.01.2022 On Saturday night the Miles for Marcia Team held a fundraising event at the Toowoomba races. How amazing to hear they estimate the event has raised $40,000 for their Pies to Pacific effort this Saturday! This is a video we filmed to play at the event which was introduced by Shane Webke. If you would like to contribute to their fundraising you can donate here: https://secure.mndandme.com.au/my-fundrais/1256/team-marcia

04.01.2022 The Martin Johnston Furniture Raffle Self-sufficiency is a shared value amongst the Johnston family in Billinudgel, New South Wales. Living in a small community outside of Byron Bay, Bruce Johnston and Martin Johnston, worked together for 13 years as a two-man team, crafting a range of hand-built furniture and fittings for a variety of high-end architectural projects in the area. Employing only traditional methods to create each piece, no detail has ever been overlooked due t...o the dedication and sense of responsibility Bruce had for each project. Upon receiving the devastating news two years ago that Bruce had been diagnosed with Motor Neurone Disease, Martins sense of self-sufficiency was deeply challenged as he felt hopeless in the fight to help his father. Crafting one of his signature pieces the "Custom Sideboard" made entirely from local and sustainably sourced Tasmanian Oak, Martins greatest hope is to draw funds and spread awareness to help put a stop to this insidious disease. You have the chance to win this beautiful piece of furniture and help Martin with his mission. Tickets are now available. Raffle drawn Monday Oct 12th Buy your tickets here https://www.raffletix.com.au/martinjohnstonraffle

03.01.2022 Today is the first day of Spring and also two months until The Race that Stops the Nation! Melbourne Cup is going to be very different this year with Covid-19 restrictions affecting how people will watch the race and the tpe of events we can have and attend. We want you to consider the MND and Me Foundation when organising an event. You might be organising a work function in the office or a private lunch or get together at home. You might be at a pub or restaurant to watch ...- wherever you are, we want you to run a big or small fundraiser for the MND Foundation. With this type of event, the options are endless - sweeps, raffles, donations, dress up donations or even guesses as to who will wear the best or worst outfit! You are only limited by your imagination. You can register your event here and please keep us updated on your fundraising ideas! https://events.mndandme.com.au/even//melbourne-cup-for-mnd #MC4MND

03.01.2022 State of Origin Game III is now a decider for the series! Grab your raffle tickets now for your chance to be at Suncorp Stadium next Wednesday night! Ticket sales close at 9am Monday for the draw at 9.30am. Don't miss out! https://www.raffletix.com.au?ref=ud6s2

02.01.2022 Biogen are conducting a market research project to ascertain information on the experiences of people living with MND in Australia. The company they have engage...d is seeking help in accessing people living with MND. Elbow Insight and Strategy are an independent market research agency specialising in healthcare and patient research, based in Sydney. They would like to engage patients with MND and or their Carers to get their thoughts on this disease. They have been engaged by a Pharmaceutical company to conduct market research into the experiences of people with MND, to better understand their life experiences, challenges and opportunities to support them better. They will not be selling anything or mention any specific treatments. The research consists of a 60 minute phone call with an experienced, independent researcher. They understand this is a challenging time for everyone and appreciate that your time is valuable so they will offer $250 in gift card as thanks for your participation. They have asked for MNDSA to help in sharing this research project in our community so any interested members can contact the lead researcher for more information. We are advised that all responses are anonymous and results are reported to the Pharmaceutical company in aggregated form. All patients details are confidential. Elbow is a part of the Australian Market & Social Research Society (AMSRS) and they adhere to a strict privacy policy which protects the anonymity of the people they speak with as part of market research projects. A copy of their privacy policy is available on request. Elbow advised they are experienced market research researchers, with around 20 years industry experience, and have conducted research with many people in the past from all walks of life with all types of medical conditions. They are very aware of the need for this type of market research to be conducted with a high degree of sensitivity and appreciation for the circumstances faced by some of the participants. They are happy to answer any questions you might have about this research if you would like to discuss further. Jonny Mackrill Director mobile +61 424 369 007 Twitter: @elbowinsight Instagram: elbowinsight Level 2, 50 Yeo Street Neutral Bay NSW 2089 elbowsydney.com.au

01.01.2022 Last chance to order your MND & Me socks in time for Fathers Day. Buy a pair and at the same time help us raise awareness for MND as well as support Queenslanders with MND! Grab a pair or three here: https://www.mndandme.com.au/product/mnd-socks-2/ And while you are at it, you can order a glass keep cup or a running hat!