Motor Neurone Disease Association of Queensland in Oxley, Queensland, Australia | Disability service

Motor Neurone Disease Association of Queensland

Locality: Oxley, Queensland, Australia

Phone: +61 7 3372 9004

Address: 1/89 Factory Road 4075 Oxley, QLD, Australia

Website: http://www.mndaq.org.au

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• Non-profit organisation
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• Disability service

25.01.2022 Int Symposium on ALS/MND: Patient Fellows The 2020 International Symposium on ALS/MND will be held VIRTUALLY from 9-11 December. This provides an excellent ...opportunity for people living with MND, who may have been unable to travel to past conferences, to attend this year as a Patient Fellow. Fellows receive free registration to the International Symposium, but must have a strong interest in scientific research. Apply here: alspatientfellows.org

25.01.2022 With the Voluntary Assisted Dying bill being introduced into Queensland Parliament this week, it’s great to see some media coverage and discussion happening. This ABC article features Kelli Downey who lost her husband Matt to MND in 2017. MND Queensland was the beneficiary of a series of fundraising events and activities that Kelli ran in-memory of her late husband and we are still grateful for her amazing effort, and we are now glad that she has contributed so earnestly to t...his important conversation. Thank you Kelli. https://www.abc.net.au//kelli-watched-her-husban/100169422 #MND #voluntaryassisteddying #CauseCareCure Queensland Government

24.01.2022 This webinar is on tonight at 7PM. See the registration link below.

24.01.2022 Don't forget that our Online MND Support Group Special Presentation is on this morning from 11AM via Zoom. The theme is 'Medications for Symptom Management' presented by Jenny Stofmeel, Nurse Practitioner from the MND Clinic at the Gold Coast University Hospital - GCUH. If you need a Zoom invite to participate in this meeting, please email [email protected] ASAP or call us on 07 3372 9004.

24.01.2022 The spring 2020 edition of MND Queenslands The Cornflower newsletter is out now! Inside this edition youll read about: our new Occupational Therapy Service; find out information about our new management committee; get the chance to know a little more about Sandra, one of our MND Advisors and NDIS Support Coordinators; learn about Glenn who uses an eye-gaze to control his wheelchair, and hear about Kev and Leanne who are Traveling with M N D. You can read the latest edition... online in flip-book format at https://www.mndaq.org.au/Get-informed/Newsletters #MND #news #newsletter #interviews #information #nevergiveup

23.01.2022 Beep Beep! It’s the final days REGISTER NOW to join Motor On for Motor Neurone Disease Car Scavenger Hunt, Sunday February 21st. This event is sure to be a morning full of laughter and fun! Register here: https://bit.ly/3q3yHWs #NeverGiveUp #MND

22.01.2022 Don't forget that our Online MND Support Group Special Presentation 'Palliative Care - What Can I Expect?' is on tomorrow (Thurs 26 Nov) at 11AM. The expert presenters this fortnight are Elizabeth David (former Director of Nursing) and Carol Hope (Director of Nursing), Ipswich Hospice Care. This free presentation is being hosted online via Zoom. If you need an invite to join in, please call us on 07 3372 9004 or email [email protected].... #MND #supportgroups #information #palliativecare

22.01.2022 I was thinking about what Id have to do 10 seconds after they told me... An interesting article on Peter, a British scientist with MND who is utilising technology as much as possible to fight MND. https://www.theguardian.com//i-choose-to-thrive-the-man-fi

22.01.2022 Just a quick reminder that this informative presentation is being held at 11AM this morning via Zoom. If you need an invite to participate, call us on 07 3372 9004 or email [email protected].

22.01.2022 If you missed todays informative presentation Continence and MND delivered by Lois Quick, Clinical Nurse Consulatant from Chronic Disease Brisbane South, Metro South Health, you can catch it online, along with a bunch of other interesting presentations at http://www.mndaq.org.au/Get-informed/MND-QLD-Webinars.aspx Thanks to Lois and the team at Metro South Health for this informative session.

22.01.2022 In August it is Whale Season in the Whitsundays! Register now to join us on the trip of a life time on the Whitsundays Kayak for MND Challenge event, August 16-21st. More info and apply: https://bit.ly/37BQP2P #NeverGiveUp #MND #FundraisingChallenge #WhitsundaysKayakChallenge4MND

22.01.2022 MND Queensland has a new YouTube channel! We have been posting the recordings of our webinars on our website and they have been very popular, but we've gathered so many of these useful, educational webinars that we thought we'd put them on YouTube to make them more accessible and shareable. You can find our YouTube channel here https://www.youtube.com/channel/UCf5MA4DA7qGU7BThP9Pg-Cg... You'll also be able to continue to access our webinars from our own website too http://www.mndaq.org.au/Get-informed/MND-QLD-Webinars.aspx We know that a lot of our clients and their families/carers really appreciate these videos, and if they can't make it to the live webinars they view it afterwards, or sometimes they view it again online just to check back on some of the information shared.

22.01.2022 Please join us for an Online MND Support Group Special Presentation at 11AM on Thursday 17 September via Zoom. The theme well be exploring is Sex and Intimacy and this session will be hosted by Lois Quick, Clinical Nurse Consultant, Chronic Disease Brisbane South, Metro South Health. Lois has been in this role for around seven years and she aims to help people live well with MND. If you havent been emailed a Zoom invite for this meeting, you can request one by calling us on 07 3372 9004 or by emailing [email protected].

21.01.2022 The Rotary Club of Cleveland are holding a Spring Garden Essentials Raffle raffle with three prizes and a total prize pool valued at $5,750! Tickets are $2 each and for every $10 book of five tickets you buy, youll go into a special book-buyers prize draw! The raffle will be drawn on Saturday 3 October. MND Queensland is a third beneficiary of the raffle and we are very grateful to the Club for their wonderful support. Get your lucky tickets now at https://www.rafflelink.com.au/rotary-of-cleveland

21.01.2022 If you missed todays fantastic special presentation on Exercise and MND hosted by Nikki and Adina from Better Rehab on the Gold Coast, you can catch the recording now on our website https://www.mndaq.org.au/Get-informed/MND-QLD-Webinars.aspx There are also plenty of other interesting presentations on our website for you to catch up on. Many thanks to Nikki, Adina and Better Rehab for collaborating with us on this educational presentation.

19.01.2022 Happy Fathers Day to all the wonderful dads and grandfathers out there! Our thoughts are with all the dads living with MND, or those who are caring for ...someone with MND. Were also thinking of everyone who has lost their dad to MND, as well as dads who have lost a loved one to MND Please feel free to leave a special comment below for a dad who has been impacted by MND. See more

18.01.2022 ePoster abstract submissions for the Virtual Poster Hall for this years International Symposium on ALS/MND are now open. The Symposium is being held 9-11 December 2020. https://symposium.mndassociation.org/for-present/abstracts/

17.01.2022 Join us from 11AM on Thursday 12 November via Zoom for an MND Online Support Group Special Presentation. The theme this fortnight is 'Medications for Symptom Management' and it's being presented by Jenny Stofmeel, Nurse Practitioner at the MND Clinic at the Gold Coast University Hospital. If you need a Zoom invite to participate in this presentation, call us on 07 3372 9004 or email [email protected]. #MND #supportgroups #information #medication #nevergiveup

17.01.2022 If youre impacted by Motor Neurone Disease we invite you to participate in our free Online MND Support Group Meeting this Thursday (20 August) at 11AM via Zoom. The topic this week is Continence and MND and its being presented by Lois Quick, Chronic Disease Brisbane South Clinical Nurse Consultant, Metro South Health. If you havent already received your Zoom invite, get in touch to request one by calling us on 07 3372 9004 or email [email protected].

17.01.2022 The Master Locksmiths Access Key (MLAK) system is an MLAA initiative that allows people with a disability access to dedicated public facilities, including facilities in National Parks and many Council municipalities, elevators at railway stations, the new Changing Places facilities throughout Australia, disabled toilets that are locked, and even the Liberty Swing. For more information on how to get a key visit https://masterlocksmiths.com.au/mlak/

16.01.2022 Our Patron, His Excellency the Honourable Paul de Jersey AC Governor of Queensland wanted to reach out to the MND community during the pandemic with a message of support. See the attached letter.

16.01.2022 Are you on the Gold Coast? Don't forget that the Gold Coast MND Support Group meeting is on this Saturday from 1PM. Details below.

16.01.2022 Many people who participate in MND & palliative care research find it has added benefits beyond the end research goal - they personally find it an enriching and valuable experience. Read more in our latest blog https://www.mndaust.asn.au//How-participating-MND-palliati

14.01.2022 Research News... The Stage 2 trial of AMX0035 shows a statistically significant reduction in the rate of functional decline in MND/ALS. More from MND Australia can be found here https://www.mndaust.asn.au//Results-from-stage-2-trial-of- ... An article from The New England Journal of Medicine can be found here https://www.nejm.org/doi/full/10.1056/NEJMoa1916945

13.01.2022 Join us on Tuesday, 1st of December, for the second webinar of our State of Play series! Register here: https://zoom.us//r/2216031583231/WN_ylYjNGwQQuCLvj5...cR3LtTQ Meet Dr David Berlowitz whose team is examining the causes and treatments of sleep and breathing disorders in neuromuscular disease (Institute for Breathing and Sleep, VIC). Meet Camille Paynter whose study examines the ways in which MND patients and their carers engage with healthcare decision-making.

12.01.2022 Yesterday we were given a $500 cheque for our participation in the October 2020 Grill'd Local Matters program. We're grateful to Grill'd Wintergarden, Grill'd Eagle St Pier and Grill'd Albert Street for your support along with all of the diners that chose to support MND Queensland. :)

12.01.2022 Sunday 13 September is the beginning of Disability Action Week and this years theme is Access-ability making things better for everyone. On Friday 18 September there will be a free online event as a part of Disability Action Week. Mind The Gap is being hosted by the Queensland Disability Network in partnership with the Community Services Industry Alliance and the aim of the event is to bring together people with disability, businesses and the community sector to explore innovative ways to close the digital divide for people with disability across all parts of their lives. Register now to participate in this free event at https://qdn.org.au/home/whats-on/mind-the-gap-event/

12.01.2022 The team had a great afternoon meeting with our Vice Patron, leading neurologist and Co-Director of the RBWH Motor Neurone Disease Multidisciplinary Clinic, Dr Robert Henderson. We are interested to hear about the studies and developments in research currently being untaken to improve the lives of Queenslanders with MND. We are also grateful for the opportunity to show Dr Henderson around our new premises and share the exciting changes that have happened here at MND Queensland in the last few years. #MND #Community

12.01.2022 Today's MND Online Support Group Special Presentation was about 'Medications and Symptom Management' presented by Jenny Stofmeel, Nurse Practitioner from the MND Clinic at the Gold Coast University Hospital - GCUH. It was a very interesting and informative session and we're grateful to Jenny and the GCUH for collaborating with us for this session. You can catch up on this webinar (along with lots of other interesting videos) at http://www.mndaq.org.au/Get-informed/MND-QLD-Webinars.aspx

11.01.2022 It’s NAIDOC Week and the theme this year is ‘Always Was, Always Will Be’ in recognition that the First Nations people have occupied and cared for this continent for over 65,000 years. We’d like to pay our respects to the traditional owners of the land on which our office is located. We’re very close to Oxley Creek, which was formerly known as Benarrawa. The creek and its surrounding catchment was known for providing abundant resources for the Jagera People, the Turrbal Peopl...e and the Jinibara People. The area is also significant to other Traditional Owners including the Yugumbir People, near the Logan River. For more information on NAIDOC Week visit www.naidoc.org.au/get-involved/naidoc-week-events #NAIDOC2020

11.01.2022 Dont forget that at 11AM this Thursday (3 Sept) were hosting a special presentation for our Online MND Support Group Meeting. The theme this week is Exercise and MND. The duo presenting this Exercise and MND session are Nikki a Physiotherapist from Better Rehab and Adina a Senior Physiotherapist and Team Leader from Better Rehab on the Gold Coast. Both Nikki and Adina have an interest in neurological conditions and have a great deal of experience of working with people ...with MND. If you havent received your Zoom invite for this online virtual meeting, email us at [email protected] or call us on 07 3372 9004.

10.01.2022 Help us Make Aged Care Fair by keeping pressure on the Federal Government to fix the My Aged Care Home Care Packages so that they offer the same benefits as the NDIS (which people over the age of 65 cannot access). Contact your local Federal MP and tell why it is important to change things now! People with MND dont have time to wait!

09.01.2022 Its Speech Pathology Week 2020.

08.01.2022 Today is the beginning of Disability Action Week. This years theme is Access-ability making things better for everyone and you can find more information on the campaign by visiting https://www.communities.qld.gov.au//all-abilities-queensla.

08.01.2022 Weve got some good news... all going well the following Walk to D-Feet MND events will be happening in 2020... Gold Coast - Sunday 11 October 2020, Hollindale ...Park, Main Beach Brisbane - Sunday 25 October 2020, New Farm Park (and along the river) Toowoomba - Sunday 15 November 2020, Queens Park Botanic Gardens We will have the relaunched registration and fundraising websites for all of these walks up and running within the next couple of weeks. So for now, save the date and start gathering your teams together. We are sorry for having to postpone or cancel many of our events earlier this year, but we look forward to seeing you at a walk soon. Please note, we will need to follow COVID-Safe practices (such as observing social distancing, not coming if youre unwell or may have been exposed to someone with Coronavirus etc.) but we know with your support, we can make these walks happen! #MND #Fundraising #NeverGiveUp

08.01.2022 Registration is now OPEN for the Virtual 31st International Symposium on ALS/MND. Due to travel restrictions, this years Symposium is now a virtual event and r...egistration fees have been substantially reduced to only 45 British pounds (approx $80 AUD). Learn about the latest developments in ALS/MND research from the worlds leading scientists and clinicians. https://symposium.mndassociation.org/ 9-11 December 2020 45 GBP

08.01.2022 Today we said farewell to Kev and Leanne who are leaving Deception Bay to move to Perth on their big adventure titled Travelling with MND - Kev and Leannes Trek Across Oz. Kev was diagnosed with MND earlier this year and he wants to do what he loves while he still can. Kev loves caravanning, nature (especially being around water) and meeting new people. So Kev and his wife Leanne are taking a big caravan trip and relocating to Perth where Kev has lots of family and frie...nds. Initially theyll be travelling north so Kev can tick Cape York off his bucket list and then theyll be travelling across the top end to Kununurra where they will need to quarantine for a couple of weeks. Kev and Leanne have a lovely new caravan with all the mod-cons to make life comfy along their trek. Joining them for their adventure is their friend Carol who will be towing her own caravan too. Along their journey Kev, Leanne and Carol will be helping to increase awareness about Motor Neurone Disease and they also want to raise vital funds for MND Queensland so that we can continue to help other people impacted by MND. Before they even left they had raised over $600 towards their $10,000 fundraising goal. Donations are welcome at https://www.mycause.com.au//travelling-with-mnd-kev-and-le. You can also follow their journey on their Facebook blog Traveling with M N D. Our Services team have already lined up support for Kev and Leanne when they reach their destination through our sister organisation Motor Neurone Disease Association of WA. From everyone at MND Queensland we want to wish Kev, Leanne and Carol a safe and fun adventure and look forward to their blog posts along their trek. Pictured in front of Kevs 4WD are (L-R): MND QLD CEO Ian Landreth, MND QLD Director of Services Stacey Thorpe, Carol, Leanne and Kevin on the right.

08.01.2022 Its always nice to hear that were doing a good job. Yesterday a service provider that we work with gave our Equipment Officer Sue some lovely feedback... "Sue, I just wanted to say thank you for arranging the commode for John so quickly!!!" They went on to say "You make arranging equipment so easy and you are always so responsive getting out equipment."... Here at MND Queensland were always open to feedback... the good ones like this make us feel appreciated, and while it may sound silly, negative feedback is appreciated too as it helps us identify any issues we may not be aware of and it assists us to improve our service provision so we can provide a quality service for people impacted by MND in Queensland. Feel free to give us any feedback by emailing [email protected] #MND #support #equipment #feedback

07.01.2022 CHAMPION MND/ALS STUDY The CHAMPION MND/ALS Study is a Phase III, double-blind, randomised, placebo-controlled, parallel-group, multicentre study with an open-label extension period, to evaluate the efficacy and safety of ravulizumab in adult patients with amyotrophic lateral sclerosis (ALS or Motor Neurone Disease/MND). Ravulizumab is an investigational medication not currently approved for use in patients with MND/ALS in any country worldwide. More information about the stu...dy can be found on clinicaltrials.gov at the following link: https://clinicaltrials.gov/ct2/show/NCT04248465. Trial sites are planned in Sydney, Brisbane, Melbourne and Perth. Recruitment is currently open for Brisbane. As with all trials, there is quite specific criteria for patients to be considered, so please discuss eligibility with your doctor. If they are not aware of the trial, then please direct them to: https://clinicaltrials.gov/ct2/show/NCT04248465 The study is sponsored by Alexion Pharmaceuticals. Any questions from clinicians can be directed to Alexion’s Medical Information department on 1800 788 189 or [email protected].

06.01.2022 The deadline for abstracts for the Allied Professionals Forum has been extended to 4 September.

06.01.2022 If you missed todays Online MND Support Group Meeting and the presentation about Respiratory System Management by Sarah Walton from the Gold Coast University Hospital, you can still catch the recording on our website https://www.mndaq.org.au/Get-informed/MND-QLD-Webinars.aspx Our thanks go to Sarah Walton, Courtney Bennie, Sharon Kwiatkowski and Andrew Shaw as well as the Gold Coast University Hospital for being involved with this presentation.

06.01.2022 If you missed our informative Online MND Support Group Presentation on Sex and Intimacy today, dont worry, you can catch it online at http://www.mndaq.org.au/Get-informed/MND-QLD-Webinars.aspx. Many thanks to Lois Quick and Metro South Health for working with us on this interesting and educational presentation. #MND #SupportGroup #sexuality #intimacy #disability #educational #informative

05.01.2022 Dont forget that the Rotary Club of Cleveland are holding a fabulous Spring Garden Essentials Raffle raffle with 3 prizes and a total prize pool valued at $5,750! Tickets are $2 each and for every $10 book of 5 tickets you buy, youll go into a special book-buyers prize draw! The raffle will be drawn on 3 October. MND Queensland is a third beneficiary of the raffle and we thank the Club for their great support. :) Secure your chance to win now at https://www.rafflelink.com.au/rotary-of-cleveland

05.01.2022 Dont forget that tomorrow (Thurs 17 Sept) at 11AM were hosting an Online MND Support Group Special Presentation via Zoom. The theme is Sex and Intimacy and the session is being hosted by Lois Quick, Clinical Nurse Consultant, Chronic Disease Brisbane South, Metro South Health. Lois has many years of experience of supporting people with Motor Neurone Disease and we look forward to her educational presentation. If you havent been emailed a Zoom invite for this meeting, you... can request one by calling us on 07 3372 9004 or by emailing [email protected]. #MND #supportgroup #sexuality #intimacy #loveandrelationships #information #nevergiveup

05.01.2022 MND Queensland welcomes David Ali as the new CEO of MND Australia and thanks outgoing CEO Carol Birks for her many years of service to Australians impacted by MND.

05.01.2022 RESEARCH ALERT! MND Research Australia have some research grants available. Applications close on 28 Aug. See below for more information.

05.01.2022 Glenn has MND and has recently hooked his eye-gaze device up to his electric wheelchair allowing him to control his chair just with his eyes. Glenns story is featured in the latest edition of The Cornflower newsletter and can be read here https://issuu.com//spring_edition_of_the_cornfl/s/10984935.

04.01.2022 Awful to hear that the inspirational Justin Yerbury was informed on Monday that his 24/7 care service was being terminated!

04.01.2022 Please note that this event will be on at 12:15AM (Australian Eastern Standard Time) on 2 December. ALS/MND Connect is an open session which allows people living with ALS/MND and their caregivers to attend an afternoon of presentations by neurologists and researchers. This session is live-streamed on Facebook, so people with ALS/MND from around the world can attend and ask questions online. This year's panel will be moderated by Dr. Nick Cole, member of the Alliance Scientific Advisory Council. The panelists are: Dr. Jinsy Andrews, Dr. Janice Robertson, Dr. Ludo Van Den Bosch, and Dr. Christopher McDermott.

04.01.2022 Are you interested in learning more about voice or message banking and eye-gaze technology? If so, don't miss out on our MND Online Support Group Special Presentation this Thursday at 11AM via Zoom to learn more from Georgia Cuskelly, Speech Pathologist at Better Rehab on the Gold Coast. This free informative presentation is being held via Zoom. If you need a Zoom invite to participate, please email [email protected] or call us on 07 3372 9004. #MND #voicebanking #eyegaze #information #supportgroup

03.01.2022 Do you care for someone with Motor Neurone Disease? If the answer is 'yes' then you are welcome to join our free MND Online Carers' Support Group Meeting this Tuesday (10 Nov) at 1PM via Zoom. You can participate in this Zoom meeting using a computer, tablet or phone. If you need a Zoom invite, please email [email protected] or call 07 3372 9004. #MND #peersupport #service #nevergiveup

03.01.2022 A report on the drug Riluzole which shows that it may extend the lives of people with MND by 6-19 months, with greatest benefits if taken early into the onset of the disease. Check out the factsheet on MND Australias page.

02.01.2022 Kev and Leanne are getting more media coverage and helping to raise awareness on MND during their Traveling with M N D trek across Oz.

02.01.2022 Join us from 11AM on Thursday 3 September for an Online MND Support Group Special Presentation - Exercise and MND - presented by Nikki and Adina, physiotherapists from Better Rehab. If you havent already received your Zoom invite for this meeting, get in touch to request one by calling us on 07 3372 9004 or email [email protected].

01.01.2022 Yesterday our sister organisation MND NSW held their annual Ask the Experts session, and for the first time, due to COVID-19, it was hosted online. You can view this informative session now at https://www.youtube.com/watch?v=NZrqV492EHc

01.01.2022 This Tuesday (15 September) MND Queensland is hosting a free MND Carers Support Group Meeting via Zoom. If you care for someone with MND, you are welcome to join the meeting and make connections with others going through a similar situation to share experiences and learn from one another. If you need a Zoom invite to join this virtual meeting, please call us on 07 3372 9004 or email [email protected].