September – October 2017
China trek raises over $110K
Page 2 MNDNews | September – October 2017
MND Victoria Contents 265 Canterbury Road (PO Box 23) From the desk of the CEO 3 Canterbury VIC 3126 Support Services 4-5 Phone: (03) 9830 2122 Freecall: 1800 806 632 Volunteer news 6 Fax: (03) 9830 2228 Your stories 7-9 Email: [email protected] China trek 10-13 Website: www.mnd.asn.au Facebook: www.facebook.com/MNDVic Group programs 14-15 Twitter: www.twitter.com/MNDVic Bendigo Health & Community Professionals Day 15 ABN 44-113-484-160 Research update/opportunities 16-17 Reg. Assoc. No. A7518 Awareness and Fundraising 18-21 State Council Handy hints, tips and new technology 22 David Lamperd—President Donations 23 Katherine Barnett—Vice President Events Calendar 24 Jeremy Urbach—Hon. Treasurer David Ali Staff Duncan Bayly Chief Executive Officer: Rodney Harris Christopher Beeny Administration Manager: Megan Crellin Barry Gunning Administration Assistant: Babita Narayan Manager Fundraising: Kathy Nightingale Jodie Harrison Fundraising Officer: Daniel Woodrow Angeline Kuek Manager Support Services: Julie McConnell Wayne Pfeiffer Coordinator Support Services: Chloe Williams Janette McDonald MND Advisors
Working towards a world Ruth McEvoy Elizabeth Crask without motor neurone disease Lesley Burcher Eric Kelly Support Groups Lauryn Matheson Jenny Waites Trish Duffy Western Metro Leanne Conway Last Monday each month at 12.30 pm Coordinator Operations: Alia Turnidge Mrs Christine Robson, (03) 9379 7715 Coordinator Equipment Service: David Harkin Barwon Region Equipment Officer: Kathy Walker St David's Hall, Aphrasia St, Newtown Coordinator Volunteer Programs: Vacant First Monday every second month at 12 noon Coordinator Information and Resourcing: Rev. Ian Parton, (03) 5241 9344 David Kerley Ballarat Region Information and Resourcing Officer: Meets at various locations around Ballarat Alison Jones Contact: David Kerley (MND Victoria) Information and Development Officer (digital Tel: (03) 9830 2122 or 1800 806 632 communications): Heidi Bryce
MNDNews | September – October 2017 Page 3
From the desk of the CEO As the summer is coming, so are our Walk to D’feet MND events. These are fantastic social events, bringing together families, workers and We are well into the new financial year, and fast supporters to demonstrate their commitment to approaching one of the largest transitions to each other and the fight against MND. They are the NDIS. also great opportunities to raise funds, and seek To support every person eligible to seek support sponsorship for your participation to support for via the NDIS, we have created and filled a new MND services and research. Please look at our MND Advisor position, and have flagged the website – www.mnd.asn.au/walk – and register creation of two additional positions as we measure online. We have great new t-shirts for all the impact of those areas coming on line over the registrants, and mechanisms to support your efforts next nine months. to secure sponsorship and raise funds. We have written to all potential NDIS participants and highlighted the need to contact your MND Advisor as soon as you have any contact from the NDIA, the organisation managing the scheme. Early discussion with the MND Advisor will ensure that your needs and wants are accounted for in your initial plan of supports, and that we can get it right the first time. MND Advisors are available to help you and represent your needs and the issues surrounding the diagnosis of MND. Please remember that if you currently have disability aids and equipment from the MND Equipment Service The Voluntary Assisted Dying legislation will be these need to be funded by the NDIS and included presented to parliament soon. We have continued in your support plan. our position of neither supporting nor opposing this Our China adventurers will have returned and as I legislation. MND Victoria represents a broad write this they are winging their way back to church of people, and we do not seek to press for Australia. They have had a challenging time either view. However, we will support absolutely walking the Great Wall, reflecting on their links with the rights of any person living with MND in all MND through family and friends, and addressing things that are lawful. the challenges that the walk has put before them. Our community is about to be asked about another Their efforts to raise funds from participating in this “rights” issue, in the postal vote on changes to the adventure have been remarkable – they have Marriage Act. I encourage everybody to vote in the raised just over $110,000! These funds are applied postal survey. to the delivery of care and support for people with Finally, our AGM is on Monday 16 October 2017. MND, and contribute to the costs of the MND Our guest speaker is Professor Margaret Advisors, our Equipment Service, and our O’Connor, who has been a member of the Information and Resourcing service. Ministerial Advisory Panel on Voluntary Assisted Dying. Come and hear about the progress of the Association, vote, hear Prof. O’Connor and meet up with old friends and new. I look forward to seeing you there. Until next time. Rodney Harris
Next year we are organising a walk on the CEO Kokoda Track – will you challenge yourself to participate in this adventure of a lifetime and raise funds for the fight against MND?
Page 4 MNDNews | September – October 2017
Some of our clients have advised us that they have From Support Services been contacted by an NDIS representative and given very short notice regarding the timing of their Hello again. As I am writing this it is hard to believe planning meeting. You can request that the that it is spring, the season of expectation, new planning meeting is conducted at a time of your growth and promise. choosing, in person, in your home and you can As in most of my recent newsletter pieces I am have any person you wish, a family member, friend again writing about accessing the National and the MND Advisor at the meeting for support. Insurance Disability Agency (NDIA) for those of you Again I strongly encourage you to have the support who are under 65 and will still be under 65 when of your family or friends and the MND Advisor. the NDIS rolls out to the area where you live. I am The NDIS is very new and most of the people sorry to harp on about this, particularly for our other working in the NDIS have little knowledge or readers who have little or no interest in the NDIS experience of MND. They need guidance. It is however it is vitally important that those of you who difficult to have your plan reviewed in a timely have the opportunity to become a participant in the manner if it is incorrect therefore it is best to get it NDIS are aware of how to make the most of all it right the first time. This is a lot more likely with good promises. pre-planning and preparation supported by someone with expert knowledge to assist. We know that our clients who are eligible for the NDIS are currently being contacted by a NDIS local area coordinators and planners are new representative of the NDIS with the view to to their roles. They do not have specific experience commencing the plan development process, in or knowledge of an uncommon disease such as many cases even if they are not in a current roll out MND. This has been of considerable concern to area. It is extremely important that you are well us. To address this concern we collaborated with informed, have thought about how you want to live MND Australia and other state MND Associations your life and what type of support you need to make within Australia and developed a reference tool for this happen and live as well as possible. During the NDIS planners to use when developing plans your meeting with the NDIS planner you will be for people living with MND. This information is asked many questions. One of these will be about available for you, just contact your MND Advisor. your ‘goals’. This is because all funded supports There has been another staff change within the are assessed as to whether they are ‘reasonable Support Services Team. To address the increased and necessary’ to assist you to achieve your goals. demands of the NDIS, State Council recently I strongly encourage you to engage in pre-planning approved the appointment of a new MND Advisor. with your MND Advisor as soon as possible to Leanne Conway, previously the Coordinator begin to understand the opportunities available Volunteer Programs, has been appointed to the through the NDIS and how to ensure your plan will role. Leanne has already been working in this role provide for your needs. Your MND Advisor is well in a temporary position since earlier this year to experienced to provide information regarding cover a period of staff leave. I feel confident that becoming an NDIS participant and the potential Leanne will bring the same dedication, commitment needs associated with MND. Our experience is that and skill that she showed as Coordinator of when our clients have a well thought out and Volunteer Programs. I am delighted to welcome her appropriate NDIS plan their support needs are as our newest MND Advisor. generally well met. Vale Sue Sweeney Your MND Advisor can attend your planning meeting with the NDIS planner. If you want to Some of you, I am sure will remember another of continue to have support from your MND Advisor our MND Advisors, Sue Sweeney with warmth then this needs to be identified in your plan under and fondness as we all do. Support Coordination. Similarly any equipment you It is with a heavy heart and great sadness that we are currently using that belongs to MND Victoria or share news of the death of our colleague and another organisation must be included in your plan. friend, Sue Sweeney. Sue died on Saturday, 26 Equipment is classified as assistive technology August peacefully at home with her two sons, Tom under NDIS.
MNDNews | September – October 2017 Page 5 and Ben, her sister, brother and close friend by her She had a wonderful time. Earlier this year, side as was her wish. Sue was 61. however, the medical treatment was no longer able to keep her well. At the end of August, at home, in the company of her beloved sons, sister, brother and very close friend I am very sad to advise that Sue died. Sue was 61. Sue was an integral part of our team for more than four years. With her bright and sunny personality, excellent skills and experience and dedication to improving outcomes for people living with MND she was a valued colleague, friend and resource for us all. Sue, with her sense of fun, courage, caring and commitment, will be remembered fondly with warmth and admiration by all whose lives she touched. She was indeed a very special lady. The We farewelled Sue from our team at the end of world is a darker place without her here. 2015 as she headed off to retirement with lots of Keep safe and warm during this changeable plans which included much travel. Unfortunately, weather. just prior to commencing her retirement Sue had become ill. Although receiving constant medical As always we welcome your feedback. care Sue still fulfilled her dream of traveling to Julie McConnell, Manager Support Services Canada and the USA on an extended holiday. MND Information Session Renewal of MND Victoria We warmly invite people with MND, Membership their family and friends to an Information session about MND. Have you renewed your membership for 2017? You will have received a reminder if your At 7pm on Saturday, 18 November at MND membership is due for renewal. Please keep up Victoria, 265 Canterbury Road, Canterbury. your membership—we need you. Please RSVP by 5pm, Friday, 17 November. Please phone the office on: 03 9830 2122 or Phone: (03) 9830 2122, 1800 806 632 or email: [email protected] for more information Email: [email protected] on MND Victoria membership.
Can you write your MND story for our next newsletter?
Please email to: [email protected] by 9 November for our next edition.
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Page 6 MNDNews | September – October 2017
Volunteer News Volunteer opportunities
Hello everyone. It is with mixed emotions that I Travel reimbursement is offered to all volunteer write this. After seven years as the Coordinator roles Volunteer Programs, I have decided to step down Massage – Volunteers needed in the from the role and take up a new position as MND following areas: Advisor. While my new challenge is very exciting, I Bendigo, Bundoora, Campbellfield, Caulfield, East am very sad to leave ‘my’ volunteer team. Melbourne, Elsternwick, Essendon, Noble Park, I would like to say thank you to all the volunteers Seddon, St Kilda, Whittlesea past and present who have been part of this Time required: 2 – 3 hours per week/fortnight amazing team. Over the past seven years you have delivered close to 50,000 hours to the Association Preferable day: Dependent on client in such a variety of ways and we are very grateful. Duties include: Visiting client in home to provide It has been a pleasure and a privilege to work with gentle hand and foot massage a group of people who on the whole, make my job Essential skills: Good communication, enjoy easy. It is not often you can say that you love your working with people job, but for the past seven years I truly have. But… the time has come for a new challenge. Hairdresser Hairdressing volunteers are needed in the So, for my final ‘pearls of wisdom’ I leave you with Melbourne Metropolitan Area: the wise words of Dr Seuss ... Time required: As required “Oh the wonderful way you’ll feel, you hear? Preferable day: Dependent on client If you just go out and volunteer … Duties include: Visiting client in home to provide a A bird … a worm .. a guzzle-bivvit, haircut Could all use some help if you’ll just give it; Essential skills: Excellent interpersonal skills , enjoy working with people, must be a qualified You might say “No! Not! No Way!” hairdresser, must have valid driver’s licence and “I’ve nothing to give—not today anyway!” roadworthy vehicle, must have own equipment, But you’ll see if you look deep inside of you, willingness to travel outside home suburb area You’ve lots to give! (negotiated). It’s true! You do! Leanne Conway, Outgoing Coordinator Volunteers
MNDNews | September – October 2017 Page 7
Your stories completely indecipherable to others, although I understood it perfectly well and marveled at their 2417. CROSSED WIRES incompetent hearing or questionable intelligence. Trying to maintain decorum when responding to a Thought 2417 from John McGlade’s daily journal serious matter from my partner with me grinning in her face. Trying to get words of calm out, caused no end of storming out of rooms. Crossed wires indeed, it was my forte when I spoke. For example, I would ask for “a slice of toast please” and my daughter would respond “Dad, why it so necessary for you go to Mexico and why now?” I would be incredulous at such responses and when I would protest I didn’t want to go to Mexico I would be reprimanded by “why didn’t say so, if all you wanted was the remote?” My utterances were perfectly clear to me but obviously others were hearing them not as I understood them. This impasse was eventually solved by an iPad with a talking app. I now assumed I was finally out of the woods because iPads would have no wires; but there must be at least two wires in my iPad because it often, unprompted, would spontaneously blurt out, at full volume, something I said in all private confidence to my partner, of an explicit nature, the day before, About seven years ago I was diagnosed with a slow despite copious erasing’s; once to an old lady form of motor neurone disease (MND). For most getting her New Idea at the newsagent! people such a diagnosis would be horrific, but, true Such outbursts would be as much of surprise to me to form, I saw this as an opportunity to be free. To as the old ladies of the town who suddenly were be free from domestic expectations like mowing presented with a totally new idea from my closed lawns, fixing cars and carrying out the garbage. I briefcase!! I then got a replacement, a smaller iPad saw this as an opportunity to focus on my real work, I could fit into my pocket but this one talked too fast, since a teenager, as a visual artist. for people to understand and I couldn’t alter the Over time my legs became weaker and I was often speed it spoke!!! I have, of late, turned to hand tripping over my own feet and gave up driving. gestures with no wires attached. Eventually I had to use an electric wheelchair, which As a published poet, loss of my speech is a double was exciting, particularly on speed 5 (Only used on whammy because I can’t recite my own poetry at the freeway!). the monthly, local poetry meetings. However I have However I did not expect what was next to come, I won the poets cup many times because of my actor was slowly losing my speech and with that, laughing friend, John, reading on my behalf (He also read my uncontrollably at basically everything. Most people, PhD presentation in 2015). even doctors, would say, “What’s the problem? It’s The habit of outsourcing has also extended to my better to be happy than crying at the slightest painting and sculpture. Through the local men’s remark”. shed I have developed a friendship with Brian who But they didn’t understand the extreme does all my wood–work to my designs. Some of inconvenience and inappropriateness of this these constructions I then photograph and print out tendency that lead to so many crossed wires with on A4 card and apply to the canvas because my my family and friends not to mention shopkeepers! fine hand skills are not what they used to be! I even My speech was precarious enough but add to it my designed a wheelchair friendly easel, which Brian laughter at the slightest eye contact made it duly made; no crossed wires with John and Brian!
Page 8 MNDNews | September – October 2017
Your stories friends. Massages and haircuts. The monthly newsletter for the bowling club and digital photo albums. Birdwatching (a duck just flew into the tree Having just reached 10 years post diagnosis I outside my window), lap-topping, reading and wrote the below email to friends and family so this sometimes, sometimes just watching the world turn. opportunity to "tell my story" came at just the right MND has taken some things away, wrought many time. To put the email in context I was diagnosed changes but also given me much, including time to with MND in June 2007 age 36, 2 weeks before I think about what "my life" is, how I choose to live was due to fly out to Mongolia on holiday. First and one day leave it and to remember all the thought "s!@t, f@!k, f!@k ". Second thought " how 'yesterdays', live as mindfully as I can in the will I end it when the time comes?". Third thought 'presents' and still look forward to the 'tomorrows'. " ". Fourth thought " ". You get the drift?. And that brings us quite neatly to the email below ... There have been many more thoughts since that Well people here we are; 10 years post diagnosis time and most of them far more interesting. I have and despite the pretty crappy odds I'm still here so been fortunate in that my progression has been "YAY ME!". I'm not going to say that it's been a quite slow, so much so that following my diagnosis walk in the park, which actually would be quite nice I was able to continue working as a clinical right about now; because quite frankly MND sucks. psychologist and living on my own for a further 7 Thought about mentioning the things I can no years. I have had the luxury of time to adapt to the longer do just to be upfront and honest about what loss of abilities and the changes that MND has having MND means but, while challenging, they are brought to my life. In terms of what I can and only the back story not the whole story. There are cannot do, at the moment I use a powered obviously a whole lot of things I can no longer do, wheelchair for mobility but am able to self transfer BUT, and it's a big but - and no, not that kind of big to and from bed, toilet and lounge chair. My speech butt smart arse (you know who you are) - this life has deteriorated but is still intelligible which means with MND has brought many things, with ironically, that not only can I continue to talk with friends and time being one of them. Time to sit and watch and family I can also use voice activated software to think. About the nature of things and the meanings write emails, comments on Facebook and poetry. I and mysteries hidden in them. About who I am and have problems with the texture of some foods, who I am not. About what defines me and what however, for the most part, I continue to eat what I always have and have strangely discovered a taste for crumbed brains! I'm sure there's irony in there somewhere. I have tried a VPAP machine but found that it just didn't suit me and I still seem to sleep better without it. I no longer live on my own having moved to my parents' "little piece of paradise" 3 years ago, where we all rub along together quite nicely. All in all I'm doing relatively okay, am grateful that I have had more time than I know most people living with MND have, and plan on doing what I can for as long as I can. How long this will be and how I will feel when it comes to the process of dying I just don't know but what I do know is that I will have good, no great, people around me when it comes. While I am living, however, I spend my days hanging out with sheep, chickens and cows, with lady bowlers and "senior friends" from View Club. Morning tea on the verandah with mum and dad and afternoon chats with my "shower ladies". Keeping up and catching up with family and
MNDNews | September – October 2017 Page 9 doesn't. About what I can live with and what at Distant friends whom hearing from makes me smile some point I may choose not to. About my own and brings them closer. Neighbours who went thoughts and where they come from and where, if above and beyond and at all hours of the day and anywhere, they might be leading me. I have had night. Work-friends who became friend-friends and the time to follow my musings and ponderings and who never anticipated that making me breakfast, as a result have discovered much about hitching up my trousers, wiping up my tears and hermaphroditic jellyfish, the history of birdsong in being my own personal support group was in the Australia, elements of the periodic table, how to get job description. You made work a great place to be to an out-of-the-way restaurant on a cliff in South and are always in my thoughts. Friends who Africa, Darwin's origin of species and the checked in on me, made me bacon sandwiches, beginnings of time. I have sat with Ratty on a river chauffeured me hither & thither, picked me up when bank, spent time with a Swedish man called Ove, I fell down, stopped me falling, took me on woven carpets with Afghan women, solved crimes adventures and shared their homes and families with Sherlock, swum with otters in Scotland and with me. Words are simply not enough to thank you gone back to Hogwarts for the 5th time. for all you have done and continue to do. I have discovered that being able to run and walk And family, both near and far. Family who do what and dance, which I do miss and have grieved the families do. With love and humour. With care and loss of, never really did define me and that not the patience of saints. Family who have allowed me being able to do them has not diminished me. I to keep my "Lou-ness", the mix of things that make won't lie and say that I wouldn't be lined up with the me, me. Even those bits that can be quite best of them if there was a way to get these things challenging. Yes, despite my serene and saintly back, but for me the things that matter most are the appearance I can be stubborn, impatient, things that I can still do. The things that are joyful, opinionated and a little bit stroppy. I have been that bring smiles and laughter and leave me with a known to spit the odd dummy, be a little too sense of contentment. Thinking about what those demanding and I still say stupid things sometimes. things are they are mainly the "little things"; the feel MND has not changed that but it has given me the of the sun on my skin, the winter chill in the air, the time to reflect on these, to say sorry when I need to smell of smoke from the fire, identifying a new bird, and to work on being better. MND does not give me the briny taste of oysters, watching a 3-year-old's a free pass on any of these things. passion and enthusiasm for life and the collection Finally mum, dad and little brother (making myself of moments that make up a life. And always, cry now). You have made me who I am, given me always people. what I need to live this life, including a home I New people, old people and strange people. Let me always knew I could come back to, and the explain. Let's start with "strange people"; these are freedom to live it on my terms. I love you all for all those who, strangers at first, I've met on trains and that you are and all that you do. buses - and at train stations and bus stops - in the Along the way there have been tears of sadness, supermarket, on the street, at work, in hospitals quite a bit of swearing and moments of frustration and all places in between. Some I met only in but there have been many more tears that come passing and never saw again, some became from others' care and kindness, tears of excitement nodding acquaintances and others became "new and happiness and much, much laughter. I have people". New friends. Great friends. Even canine literally rolled on the floor - and under a table - with friends. To all these new friends, thank you, I hope laughter; a memory that always makes me smile you know who you are. and one which I shall carry with me until the end on And "old people"? This motley crew includes all my days. In fact I have also almost laughed myself those people who were in my life pre-MND, are still off the toilet (thanks mum), off the lounge, into my in it now and have made it and me what it is and car and to the point of not being able to breathe. who I am. Childhood friends who have become Maybe I should just stop laughing? I think not. And much more hands-on in the friends department, on that note I shall bid you all a fond farewell for always make me smile and laugh and despite their now and wish you a life well lived. fears haven't broken me yet!! I have come to know No regrets, more about you and you have become so much more dearer to me than I think you know. Lou
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Day 1
“Good day today. Very busy!! Just got back to the hotel. Visited Tiananmen Square, had lunch then spent a few hours in the Forbidden City. Such an amazing place! We did some tai chi which was very humorous ... went to a circus to see a show which was really cool. Had dinner and everyone is now ready to crash!”
DAY 2: “The lack of coffee had affected half the group so we Day 2 made the small walk to grab a Starbucks coffee to start the day ... We then went to see The Temple of Heaven which is a nice big park with a huge temple as the centre piece. In the park is a large outdoor gym that is home to some incredibly fit and strong elderly locals... They certainly put all of us to shame! Next stop was a visit to a local family's home where they taught us to cook dumplings. We were then treated to a lovely local feast for lunch which included our amateur looking dumplings! From there we got onto a rickshaw and took a ride around a local village. It was certainly eye opening! We then went and met a "cricket fighter". He told his story about the cricket fighting culture in China. These crickets are worth thousands of dollars and people bet on 2 crickets fighting each other... they are known to gamble cars and houses on these fights... We got to met his pride and joy nicknamed "Tyson" after Mike Tyson. It was one huge cricket! He also showed us his turtles, lizards, rabbits, cockatoo's and other talking birds ... It was a very unique experience to say the least! We then came back to the hotel where a few people went to find massages and the rest had pizza and fried chicken for dinner. An early start awaits tomorrow as we start on The Great Wall!”
"To start our second day on the wall we Page 11 MNDNews | September – October 2017 were greeted with toast, butter and jam along with some very strong Nescafé coffee. This may not sound that fantastic but for the whole group it was the greatest thing ever. There is only so much local cuisine you can eat... After 2 hours on the bus we did a small warm up and stretch before heading up a huge incline to get onto the wall. This certainly kick-started the hearts! From the moment we got on the wall we were all speechless. The scenery was unlike anything we'd imagined. The whole day was on thin, unstable and rocky ground with the odd very steep stair case. One quote was "these are not stairs, they are fences"! So whilst everyone was taking in the surrounds they also had to be cautious with Day 3 their footing. It made for very fun trekking conditions. "This morning was an early start as we had a We stopped for lunch in an old watch tower. long morning in the bus ahead. We tackled This was a good chance to refuel and get out Beijing's rush hour which was an experience of the very hot sun! in itself. We continued on for another two and half After about 3 and a half hours we arrived at a hours before reaching the village we are now tomb site where we visited some incredible staying in. underground tombs. This one in particular was home to a Qing dynasty emperor. A cold shower, a few well earned beers and a really nice banquet rounded out another Learning about the long history of China has amazing day. been so fascinating for everyone! An early night for some whilst others are We then went and had lunch. A couple in the learning the art of Chinese paper cutting group are already over the local cuisine so from a local master!" they got stuck into some Pizza Hut they kept from the night before... Once we got back on the bus nearly everyone had a nap. After another hour and a half we Day 4 were at an entrance to The Great Wall! The views were instantly breathtaking and we climbed up and down some very steep restored parts of the wall. This was an incredible experience for everyone. We got to our finish point far quicker than anticipated so we decided to go on further. As the sun started setting we got off the wall and proceeded to our accommodation for the night. Another Chinese banquet, a few beers and some story telling from each person in the group rounded out an unforgettable day!"
Page 12These MNDNews | September legends – October 2017 have raised over $110,000!
"Today was hot! We trekked a part of the wall that was quite touristy but very challenging! We had a 2-2.5 hour steep uphill climb that really tested everyone's legs and heart rates. We posed for many photos along the way. We are becoming accustomed to the amazing views but they certainly don't get boring! Once at the top, depending on who you are, it was either a daring and exhilarating descent or a cautious and safe trek down. We finished the day a bit earlier than expected because everyone is awesome and pushes themselves. We had lunch then a 2 hour bus trip to another hotel. Everyone is getting some well deserved naps on these lengthy trips! We rested for a couple of hours before taking over a local pizza store. Fair to say we all took 'all you can eat' to another level! An early night before we do it all again tomorrow!" Day 6
"So today was quite a laid back day. During the hour bus trip to the wall we were taught a bit more Chinese language, including how to say and write our names in Chinese! We arrived at a very touristy part of the wall. It was very smoggy so the views were just about non existent! We walked up a very long and Day 5 steep part that woke us up ... Once that was done it was a nice cruisy stroll to finish our time on The Great Wall. We got back on the bus, ate Subway and headed back to the hotel. Most people rested for a few hours. A couple of us jumped on a bike and went for a ride to some local basketball courts where we joined in a pick up game. We all went to dinner then most of the group kicked on at a roof top bar. A small sleep in is planned before we head to the local markets tomorrow!"
These legends have raised MNDNews | Septemberover – October 2017 $110,000! Page 13
"We had been told today was the best day of trekking and also the toughest. It sure didn't disappoint! We started with a very testing uphill climb through the jungle. It started steep and just kept getting steeper... To make it that bit harder we were dealing with 95% humidity. It was very sweaty work! Once we got to the wall we were greeted with some very broken parts and lots of overgrown trees and scrub. We had to really concentrate with every step. Before we started the day we were told we were going to see the best views for the whole trip today. Unfortunately it was very hazy/smoggy so we couldn't see much below us! After lunch we made our way to a famous part of restored wall. In the past it has been visited by The Queen and in more recent times Michelle and Barack Obama. We walked down a part known as The Heavenly Ladders. It is 600 steps straight down from one watch tower to the next. It is famous for people racing up this section... For some of us that's an instant challenge so once we were at the bottom 3 of us 'raced' up the 600 steps. Completely and utterly exhausted is an understatement... We kept trekking up and down the hills until we finally reached the toboggan ride. A 5 minute fast descent down the mountain in a toboggan was the perfect way to end a gruelling but very amazing day! There was a great sense of accomplishment amongst the group this evening. Another Chinese banquet followed by massages for half the group and an early night for the rest capped off a very memorable day."
Day 7
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How do you get involved with the Group Programs groups? MND Victoria will contact potential participants for the Living On, Living Through and Living Well Living Well programs shortly before the groups are run. Living Well is a group program for people with However, you are more than welcome to contact MND and their carers. Participants have the MND Victoria to register your interest: opportunity to share knowledge and discuss topics Phone: (03) 9830 2122 or 1800 806 632 or email: relevant to living with MND. [email protected] The format of the program varies to suit the needs of participants and may include readings, group Meeting others discussion, video presentations and guest speakers. Additionally, participants provide each other with support and are able to share ideas and Are you interested in having contact with solutions of their own. others living with MND? MND Victoria can assist people with MND, carers, What past participants say about the Living Well: family members and friends to get in contact with
“It was a great couple of days, right to the others in similar circumstances. point. I left happy… in a good frame of mind” This can be done through: “...it has been very enlightening and MND Victoria group programs informative. It also gave me a rare opportunity to meet with others in similar situations and Ongoing support groups learn from each other” Facilitating contact either in person, by phone or by email “We enjoyed it and we got more than we gave.” Referring to external online support groups. Living Through If you would like to be in contact with others, but Living Through provides an opportunity for newly are uncertain of how to go about it, then contact us bereaved carers and family members to meet with and we can talk you through your options. others who share similar experiences in an informal Please email: [email protected] or phone: and friendly environment. 03 9830 2122 and speak to David Kerley. Participants hear from a guest speaker who Are you the partner of someone living presents on typical grief experiences. They also with MND? have the opportunity to share advice with one another and have access to bereavement support My name is Gaynor Crossan and my husband resources. Graham has MND. I would like to set up an informal support group and am keen to meet with any other Previous participant comments include: partners who are interested to chat about how we “I thought the depth of the conversation and might get this started. I'd like to meet in the sharing was engaging and very meaningful.” Eastern/South Eastern suburbs. Please contact me on: 0414 816 426 or email: [email protected] “I've surprised myself by how much I got out of the bereavement session.” Facebook support groups Living On Living On is a four week program designed for MND Carers Australia former carers. It provides the opportunity for people An online support group for Australian MND carers who have been bereaved for 12 months or more to to discuss issues they face. MND Carers Australia meet in a facilitated group to explore positive ways is independent from MND Victoria, but has asked of moving forward whilst finding ways of retaining us to promote their group. To access the group you treasured memories. will need a Facebook account.
MNDNews | September – October 2017 Page 15
A message from MND Carers Australia’s administrators: MND Carers Australia’s focus is to Health and Community Professionals Day support the primary carer of someone with MND. The primary carer faces many challenges. They often feel isolated, feeling like no-one understands MND - The Community what they are going through. Only one family Responds - Bendigo member is allowed in the group as the primary carer needs a safe place to discuss any and all issues they may face. This is a private group where you can feel supported, ask questions and vent about the difficulties you face as the primary carer of someone with MND. We hope you will be proactive in the group and gain knowledge from others, but we understand everyone will be at a different point on the MND road. If you would like to join, go to Facebook and search for: “MND Carers Australia”
MND Angels Australia MND Victoria invites you to a seminar on Motor An online support group for people in Australia Neurone Disease (MND) for health and community whose partners have died from MND. MND Angels professionals is independent from MND Victoria, but has asked 9am – 4pm, Friday 17 November 2017 us to promote their group. MND Angels offers participants an opportunity to share experiences All Seasons Hotel, Fernery Room, 171-183 McIvor and support one another. To access the group you Rd, Bendigo, Victoria 3550 will need a Facebook account. If you would like to Featuring a keynote presentation by: join, go to Facebook and search for: “MND Angels Australia”. Dr Caron Chapman, Consultant Neurologist Kennedy’s Disease Facebook Group: ‘Motor Neurone Disease: phenotypes, progression, treatment and management’ Did you know that MND Victoria also provides support to people living in Victoria with Kennedy’s The program includes a series of presentations by Disease? Kennedy’s Disease (also known as a range of MND specialists, question time, panel Spinal and Bulbar Muscular Atrophy) is a condition discussion and interactive workshops. that has similar symptoms to MND. More details will be released in the near future. One of our members has shared a Facebook group To find out more and to book visit: for Australians with or affected by Kennedy's Disease. The group aims to help raise awareness https://www.trybooking.com/SDVC within our communities and to help each other: MND Victoria, https://www.facebook.com/groups/340781642962036/ PO Box 23, Canterbury 3126 ABN 44-113-484-160 Support services for Tel: (03) 9830 2122
carers of people with MND Freecall 1800 806 63 Carers Victoria - (03) 9396 9500 Fax: (03) 9830 2228 www.carersvictoria.org.au Email: [email protected] Carer Gateway—1800 422 737 www.carergateway.gov.au CareSearch - www.caresearch.com.au MND Victoria - (03) 9830 2122 www.mnd.asn.au
Page 16 MNDNews | September – October 2017
Research update In Australia it seems that there exist branches of the crime syndicates responsible for these horrific crimes. Extensive investigations have unearthed BREATH STACKING STUDY fragments of genetic evidence and have also By Dr Graeme Bertuch OAM implicated toxic proteins packages in the demise of the Motor Neuron family. Accumulation of TDP and Recently, people who have a neurodegenerative FUS proteins in their bodies poisoned the Motor disease have been invited to participate in a Neuron family leading to an early demise. research project called “Lung Volume Recruitment [LVR] in Neuromuscular Disease” being run by The jury is still out on the cause of this pathologic Austin Health. Diseases such as Duchenne protein appearance. Are there tight jeans involved Muscular Dystrophy, spinal cord injury, and Motor or are there other causes? In the case of Mr Neurone Disease are covered by this category. Chamorro from Guam, a toxic environmental Some of our readers may have been approached to poison, BMAA, was fed to him leading to an early participate. The aim of the study is to find out if LVR death. He had no known genetic identifiers. Using or “breath stacking” as a type of deep breathing a Translational Symmetry approach, does a similar exercise improves how well people can breath and process occur in the Motor Neuron family demise? cough. Difficulty taking deep breaths and coughing Are toxic packages of amino acids and peptides are two common complications for people with delivered from the dark underbelly of the BlOME? neuromuscular disease, leading to shallow This is speculative but deserves investigation. The breathing leading and to stiffness in the lungs and biome has been implicated in other crimes such as ribcage. LVR, or breath stacking, is a simple and inflammatory bowel diseases, Parkinson's Disease inexpensive therapy that may help overcome and autoimmune disorders. Tackling the criminal stiffness, loss of lung volume and reduce the groups in the large bowel hideout has eradicated chance of respiratory infections. A type of the difficult Clostridium Gang. resuscitation bag is used to help get and hold Extensive research into antidotes for these poisons maximum amount of air into the lungs before are occurring but to date little of significance can be exhaling. This is then repeated as a deep breathing offered to the Motor Neuron family. exercise. The trial is to see if strength of cough and lung volumes can be improved over a period of Now onto our exclusive report from Investigating time. Officer Sarah Thompson writing the Blog for MND Research. Reports from the Dublin Conference from 2016 [2 studies] found “positive physical benefits and an Motor Neuron murder mystery: who killed unanticipated psychological benefit” and an Mr Motor Neuron? “increase in voice volume and a help in By Sarah Thompson, MND Association UK expectoration of lung secretions”. MND/ALS is a First published in mndresearch.wordpress.com diverse disease with different progression rates. So will breath stacking be universally helpful? It may This blog is a fabricated story inspired by the well be early in acute onset ALS and more chronic current knowledge of MND. forms such as flail limb and upper motor neurone Today, we wake to news that Mr Motor Neuron variants, but later in the disease process with (one of the brightest stars in Hollywood) has been limited upper limb mobility and weakened chest and killed. A very specialised actor, he was well known abdominal muscles probably not. We will await the for his lightning fast reactions and action-packed outcome of this interesting trial. roles, often playing characters that had very important messages to deliver. MURDER INVESTGATION! For this edition of our investigative and social The alarm was first raised at 2am, when Neuron welfare magazine MND News we have exclusive was found dead in the kitchen of his house by the rights to a BLOG on the MND crime scene from cleaner, Miss Phagocyte. Dr Riluzole was called MND Research. This article looks at exposing the and attempted CPR, but nothing could be done to crime wave that has killed Mr Motor Neuron and his revive him. Early speculation is that he may have immediate family and support staff. been poisoned with a highly toxic protein
MNDNews | September – October 2017 Page 17 substance. Neuron’s bodyguards (hired from the feature the award winning ‘iPSC’ theatre group re- prestigious company MicroGlia) have also gone enacting the hours before the tragic murder, in the missing, leading many to believe that they too have hope that it will bring new information to light. been murdered. Despite a number of theories and mounting Ms Glial, who was Neuron’s PA since his career evidence, it remains unclear who killed Motor started, was thought to be at the property last Neuron and how. night. However, despite being seen after 2am this morning, she is currently nowhere to be found and is being actively sought for questioning by the Research opportunities police. Possible witnesses are currently being sought; it’s Have you experienced medical issues or believed that his neighbour, Mr Calcyclin, was other difficulties in seeking care on your walking his P.75 breed of dog and may have vital return from medical travel? information which he is giving to police at the If so, we would like to hear from you. Chaperone police station. Research project: What, if any, difficulties are Rumours had been circulating that Mr O2 (Neuron’s faced by medical travellers upon their return agent) had put a lot of pressure on Neuron to home? complete the filming for his latest movie, and that We are currently seeking research participants who the resulting stress may have contributed to his can participate in our study. murder. This is an international collaborative research Some of Neuron’s family members are considered project, focusing on Australia and Japan, that dangerous, especially his nephews C9orf72 and explores how patients who travel abroad for ATXN2 who are both members of the notorious medical care may be better supported upon their ‘repeat expansion’ gang. He also has family return home. Monash University is taking part in connections to the FUS, SOD and TDP cartels conducting research in Australian contexts. (whose recent changes to the lucrative jean manufacturing industry had caused friction in the As medical tourism has grown around the world, so exclusive ‘Cellular Hills’ community). have the number of the reports highlighting the adverse outcomes from undertaking medical care Despite Neuron’s many film successes in recent abroad. Health and safety risks associated with years, one passer-by we spoke to earlier medical tourism have become a major concern to commented that Neuron’s home had been in decay researchers, medical professionals and policy for some time. He described plaster falling from the makers worldwide. Due to a scarcity of empirical walls, cracked windows and an overgrown research on medical tourism, your participation is garden. However, the responsibility for this decay invaluable in highlighting what patients have is disputed by the owners of the management experienced following travel to another country or company, hired to look after the estate, Mrs Ciga jurisdiction. Rette, Mr Electro Field and Mr Pesti Cide. They point to other estates they manage showing no Should you have any inquiry into our study, please signs of decay and no one being murdered. They contact us: are currently unavailable for further comment. Chief Investigator: Professor Alan Thousands more police (from many countries) are Petersen being drafted in to help with the investigation School of Social Sciences, Faculty of Arts, (operational code name: International Symposium Phone: 0420772356 on ALS/MND), which has become an international Email: [email protected] collaboration in an effort to find the Second Chief Investigator: Dr Maho Omori murderers. One division of investigators is called the Project MinE task force, currently looking into School of Social Sciences, Faculty of Arts the months preceding Neuron’s death. Phone: 0415140838 Email: [email protected] A reconstruction of events will be filmed this afternoon and shown tonight on Crime LA. It will
Page 18 MNDNews | September – October 2017
your help. So now is the time to register, set up Awareness & Fundraising your team and start fundraising.
Every day I am reminded how families impacted Are you going to attend the Celebration of by MND want to do whatever they can to help Champions? This year we want to celebrate our raise awareness and funds so that other Walk to D’feet fundraising heroes at a “Thank you” families can continue to access the care and celebration in April 2018, time and venue to be support services MND Victoria has been confirmed. The Celebration of Champions will be providing for 36 years. open to anyone who raises $2,000 at any of our Walks – Lakes Entrance, Rosebud, Carlton, In the last MND News I highlighted some of the Bendigo or Geelong. Everyone who raises $2,000 comments from families who had used our services will be invited. For families and teams one invitation so that they could continue to live as independently will be provided for every $2,000 raised. This will be as possible for as long as possible. Today I’d like to a great opportunity to meet with other heroes and highlight and thank every one of you who makes it share your fundraising stories and more. So please possible for us to continue delivering care and help us to reach this goal for all those impacted by support to over 400 Victorians living with this MND yesterday, today and tomorrow. disease every day. P.S. Read about the awesome China Walk to For those who have been receiving our MND News D’Feet MND team on pages 10-13 who have for several years, you will be aware that we will recently returned from their Great Wall of China soon hold our annual Walk to D’Feet MND at Trek. At the time of writing these ten individuals Princes Park, Carlton. This is our major fundraising have raised $110,000. You can also read about activity of the year and we are planning for it to be next year’s adventure walk – the iconic Kokoda bigger and better this year. We will have Razor the Trail Raptor from Real Dinosaurs there to entertain the children and start the Walk (https:// So thank you very much for your amazing www.facebook.com/RealDinosaursAustralia). fundraising. Can I please encourage you to continue supporting MND Victoria this year because Until there’s a cure ... there’s care. Kathy Nightingale, Manager Fundraising
Around the State
On 6 September we teamed up with Dr Brad Turner from The Florey Institute of Neuroscience and Mental Health to present an MND information session to Uni High students. Brad’s presentation made such an impact that the students continued discussing MND for the rest of the day! Ashley’s BIG shave for MND By Donna Greenhill My father (Ashley’s Pop) Bernie Cook was a builder who lived in Walwa for most of his life. He and his There will also be Cinder the Clown, face painting, wife Carolyn had a plan for their retirement and so sausages, coffee and lots of MND merchandise. about 6 years ago they bought a very dilapidated Our goal for the Carlton walk is to have 2,500 house in a lovely part of Wangaratta and participants all wearing their Walk to D’feet MND proceeded to renovate. At the beginning they would t-shirts surrounding Princes Park and very travel to Wangaratta each weekend to begin the importantly to raise at least $200,000 for care, long arduous task of demolishing and rebuilding. support and research. We can only do that with This went on for a couple of years until Bernie
MNDNews | September – October 2017 Page 19 decided it was time to fully retire from building and concentrate his efforts on their own home. They sold their house in Walwa and settled into a now half completed house in Wangaratta. By early 2016 Dad had put all of the finishing touches to the house that he was the most proud of and began settling into retirement life, visiting his children (2 sons and 1 daughter, 7 Grandchildren) in Walwa and Melbourne and relaxing in his new home. Around September 2016 I began noticing a bit of a change in Dad’s speech. I spoke to Dad every Sunday on the phone, it was becoming slurred and I was concerned that he may have suffered a slight stroke, voicing my concerns to Mum who was not overly bothered because she had not really noticed a change (we put this down to her living with him every day). My brother who was very close to Dad his beloved Pop. He started up a My Cause page was also becoming very concerned. and set the date for July 1, to be held at the Border By early November Mum and Dad were beginning Walwa Football Netball clubrooms after a home to worry. Dad’s use of his arms was becoming game. The response from Ashley’s, family, friends limited, he was having trouble lifting his arms to and the local community donating to his Facebook shoulder height and battling to get a fork full of food page was amazing, that reached almost $3,000 to his mouth. He also stopped talking to me on the and also on the night raised more than $2,000 phone, letting Mum do the talking (this was rare). being from a tin Ash had passed around, proceeds from the after game meal on the night and people At this stage Dad began going to his doctor trying throwing in money to do the shave. to find out what was going on. She sent him for tests for a stroke, no stroke. He went back the His football mates all rallied together and put in following week, blood tests for something else, all $600 to shave his chest and eyebrows as well so negative. Over the course of these couple of weeks they came off as well. Dad was deteriorating at a rapid pace. Ashley and his family would like to take this On 28th November Dad visited his GP one final opportunity to thank everyone that donated and time. She was shocked at his deterioration and sent also that made it to the night at Border Walwa him straight to outpatients at Wangaratta hospital. Football grounds to show support. A special mention to the Border Walwa Comittee and That afternoon my brothers and I received a call members and Federals Football Club for sticking from Mum saying Dad had been admitted to around and showing support that night. The hospital and the doctor seemed to be confident that support that came from such a small knit Dad had MND but was unable to diagnose. community was amazing and we can't thank each We then had the wait for an appointment with a and every person enough for their donations. Neurologist in Albury which was not until Dec 5th. The final tally reached a total of $5,135, more That appointment confirmed our worst fears and he than Ash's original goal. [Family photo below] gave Dad a time frame of 2 months. Dad passed away the following Wednesday Dec 14th, aged 72 years. Ashley, being the eldest grandchild and very close to his Pop, took this very hard so after having being hassled for months about how scruffy his hair was, Ashley decided that he would shave it and raise funds to help find a cure for the disease that took
Page 20 MNDNews | September – October 2017
Join Dale Vine from The Block!
Trek Kokoda with MND Victoria in 2018! Email Daniel: [email protected] to register your interest!
Live Auction 7pm Saturday, 28th October 2018 at the Portland Football Netball Club. Tickets $40 Please email: [email protected] to book a table or purchase tickets.
MNDNews | September – October 2017 Page 21
Melbourne—19 November 2017 Grab your team and sign up at: Bendigo—26 November 2017 www.mnd.asn.au/walk Geelong—25 March 2018
All NEW MND Hoodies!
Only $69 inc postage
www.mnd.asn.au/gear
**Limited edition print run, please order by 15 October 2017!**
Page 22 MNDNews | September – October 2017
Xmas cards 2017! Ripper Slipper
Only $6.50 per mixed pack of 10 cards!
I have been diagnosed with MND for nearly five years. In that time my feet have become of such a shape that ordinary shoes will just not do. Ha ha, I thought, here's a chance to do some useful internet shopping as opposed to the frivolous shopping I normally do. I tried the local stores and the slippers they sell will not accommodate my feet - let's just say I'm not a See insert or phone 03 9830 2122 to order! candidate for trying on Cinderella’s slipper. I tried Australian internet sites which do have some cloth- ing for people who have challenges with dressing Handy hints, tips and new technology but lets face it they're a bit depressing. I'm not a mauve or brown girl. So I came across a site in Canada which caters for Microsoft is building eye- people with a range of health problems. You are tracking tech into Windows able to search by your disease or your actual prob- lem for instance wheelchair bound. I found some 10 slippers which are so comfortable and warm, are Microsoft is introducing a new accessibility fea- very easy to fit due to 3 multi adjustable velcro ture that allows users to control their PC's with flaps that secure across the top of the foot (my feet just their eyes. Using third party hardware like the have been toasty all winter). Tobii Eye Tracker 4C, you will be able to navigate I also have a lined cape which has allowed me to your Windows 10 PC with just your eyes, includ- venture out in Ballarat all winter. I like to think I look ing the ability to manipulate windows, type out like a superhero without the underpants on the sentences and more. outside. Ughhh. "Borne out of a Microsoft hackathon challenge Anyway, I managed to get my cape and shoes and inspired by former NFL player Steve Gleason, pay the postage for under $200. Postage is $60 who suffers from ALS (amyotrophic lateral sclero- American dollars and there are always sales. You sis), Eye Control enables disabled users with are able to buy clever trousers which you can put compatible eye tracker devices to operate Win- on in your wheelchair. Also back fastening tops. dows 10 PCs through gaze alone. " I hope this is helpful to some of you who are Find out more at: www.windowscentral.com/ experiencing difficulties finding appropriate cloth- microsoft-building-eye-tracking-technology- ing. The web address is www.silverts.com. Good windows-10 luck shopping. - Marion McCabe
MNDNews | September – October 2017 Page 23
Donations were received
Donations were made Brian Lovell Estate of Late Norma Shirley in memory of : Phillip Ward Estella Azad Raheem Adrian Callinan Estate of the late Dudley Brian Grau Elsie Clapp Barton Adams Cliff Smart Joan Clapp Trust and Foundation Don Jukes Jane Hall Donation Joe White Bequest Dimitrios Karlaftis Dorothy Cleary David Westerman Geoffrey Cass Support Group Donation Emerson School Gamini Perera Arie Donburg Ballarat Branch Sportsmen’s Helen Fawcett Anthony Vella Association John Heriot Elizabeth Chenoweth Luib Club of Wonthaggi Inc Ken Grubb Grant Dalglish Lodge of Eyclid Ken Nathan Peter Eynaud The Country Women’s Lois Williams Paul Crowe Association Myra Holden Joseph Maher Royal South Yarra Lawn Margaret Lyons Richard Ball Tennis Club Mike Walsh Pauline Rash Tintern Grammar Mark Zacharias David Loft St Francis Xavier Parish Peter Andressen Angie Cunningham Rotary Club of Grovedale Rosie Grey Alexander Vinogradoff Rotary Club of Prahran Ruth Tuttle Research Donation Corporate Donations Stephen White Annabel Crook Edgewise Insurance Brokers Tony Smith Research in Memory Ritchie’s Supermarket Trish Terry Kath Hendriks Pet Stay Wolfgang Schmidt Bequest Donation Lorraine Lea Linen Gottardo Mantovani Estate of the Late Dorothy Jean Torquay Pharmacy Christine Handson Mahler Pacific Pirates Paul Thorne Estate of the Late Violet Minnie Blue Illusion Australia P/L Stephen White Meddicks
Page 24 MNDNews | September – October 2017
Newsletter Issue Copy to Editor by Newsletter Mail Out Date
November—December 2017 9 November 2017 5 December 2017
Contributions to the newsletter are invited MND Victoria members are invited to contribute personal stories, anecdotes, letters, or ‘Handy Hints’ to the newsletter. We cannot guarantee that all contributions will be published as this is dependent on available space, but every effort will be made to do so. Please send to the Newsletter Editor, MND Victoria, PO Box 23, Canterbury Victoria 3126, or email: [email protected]
MND Victoria Events Calendar 2017-2018 Date Description Contact
Sunday, 8 October 2017 Tee Off for MND Email: [email protected]
Saturday, 14 October 2017 Rock and Roll Dance, Launching Place Email: [email protected]
Monday, 16 October 2017 MND Victoria Annual General Meeting Email: [email protected]
Saturday, 21 October 2017 Cox’s Bridge to Cox’s Place Cycle Email: [email protected]
28-29 October 2017 Tough Mudder Email: [email protected]
Sunday, 5 November 2017 Village Glen Walk to D’feet MND Email: [email protected]
Saturday, 18 November 2017 MND Information Session, Canterbury Email: [email protected]
Sunday, 19 November 2017 Melbourne Walk to D’feet MND Email: [email protected]
Friday, 24 November, 2017 Charity Golf Day, Growling Frog Email: [email protected]
Sunday, 26 November 2017 Bendigo Walk to D’feet MND Email: [email protected]
Sunday, 25 March 2018 Geelong Walk to D’feet MND Email: [email protected]
For further information and the latest events list, please visit our website: www.mnd.asn.au/whats-on/ Please email details of events you would like listed on our events calendar to Kathy Nightingale: [email protected] we can also provide you with our Event Flyer template to use for your event.
Grab your teams and register online at: www.mnd.asn.au/walk
Visit our website at: www.mnd.asn.au or follow us on:
www.instagram.com/MND_Vic | www.facebook.com/MNDVic | www.twitter.com/MNDVic