A WALK In The Park - Mndaq .au
the cornflowerW I N TE RI S S UE2016A WALKin the ParkBowl for MobilityThe day I willnever forget
2CORNFLOWER DONOR NEWS — WINTER 2016IN THIS ISSUEOur teamBruce Milligan,Chief Executive OfficerMark Whitley,Regional AdvisorDr Amanda Pavey,Senior Regional AdvisorDonna Tunbridge,Marketing, Fundraising andCommunicationsTelisa Sekona,Administration ManagerBrad Miller,Regional Advisor4Bowl for mobilityDenise Plunkett-Mansell,Client Service AdvisorSharon Gray,Regional Advisor North QLDPatronHis Excellency the HonourablePaul de Jersey ACVice PatronsDr Robert Henderson,NeurologistProf. Pamela McCombe,NeurologistIf you would like to contribute a story toour Newsletter please contact Donna:Email: donna@mndaq.org.auPhone: 07 337290048A walk in the parkMND Association of QueenslandEstablished in 1983 and founded by Charles Graham (1925 – 1983)PO Box 1039, Inala East Queensland 4077P: 07 3372 9004 F: 07 3278 9871 Freecall: 1800 777 175MNDAQ onlineStay informed with the latest news and updatesFacebook: facebook.com/mndaq Twitter: @MNDQueenslandwww.mndaq.org.auThe Cornflower is a MNDAQ publication for members and donorsand is produced by MND Queensland. The Cornflower is publishedwith due care and attention to accuracy, however, if you do findinformation that is inaccurate or incomplete please contact us.13Support GroupsFeedback and contributionsYou can send your feedback and story ideas tofundraising@mndaq.org.au
3CORNFLOWER DONOR NEWS — WINTER 2016FROM THE CEOIt’s now just over three monthssince I started in the role of CEOwith MNDAQ. Actually I find ithard to believe that it has onlybeen three months as it hasbeen a very busy time of the yearfor me to join the Associationand a lot has happened in thatthree months.One of the things that has impressed me so far about MNDAQis the amount of things that asmall team of staff can achieve.With only nine staff, many ofwhom are part time, and thesupport of our Board memberswe are always on the go providing services and equipment toour clients; fundraising throughevents, appeals and supportingothers in the community whoare fundraising for us; and keeping the organisation functioningfrom an administration point ofview. We really do punch aboveour weight, and the resourcesthat we have to get the job done!On 15 May 2016 one of our majorfundraising and awareness raising events, Walk to D-Feet, washeld in the Roma Street Parklands in Brisbane. Thank youto the hundreds of people whoturned out on the day to supportthe event and who helped raise 40,000 in total with our twowalks It was a great day!On 28 May 2016 we had our Annual General Meeting which wasa great success. A warm wel-come to our incoming Boardmembers, Peter Denham, Jackie D’Alton, David Schwarz, Elizabeth Holyer and Moya Denham.What our members don’t seeis all the work that goes intoholding a successful AGM withthe preparation of the annual review, the finalization of theaudited financial statements,nominations for Board positions,and the general organisation ofthe event. We had two wonderfulguest speakers at the AGM thisyear, Dr Stephanie Williams whospoke about the latest researchinto MND, and Patrick Wedgewho spoke about his own journey as a person living with MND.My thanks to both Stephanie andPatrick for their presentations.Thank you to the members whoattended the AGM. I would encourage all members to attendthe AGM as it is your chance tohave a say on the future of theAssociation and to keep up todate with what we are doing.One of the significant advancements that we have made inthe area of service delivery isto join a partnership of organisations called the NeuroCareNetwork. The NeuroCare Network consists of organisationsthat provide support to peoplewith progressive neurologicaldisorders including MNDAQ, MSQld, Epilepsy Qld, HuntingtonsQld, the MND & Me Foundation,Parkinsons QLD and Youngcare.Together these organisationsare running a pilot program inTownsville, called ‘Spark NeuroCare’, where we are workingtogether to provide coordinatedservices to people with progressive neurological disorders under the NDIS funding. Townsvillehas been chosen for the pilotbecause it is the starting placein Queensland for the roll out ofthe NDIS. If this pilot project issuccessful it will be a way thatthe organisations involved canprovide better services to ourclients around Queensland inthe future.Thank you for the welcome thatmany of you have given me sinceI started as CEO. I look forward toworking with you all to improvethe services we provide to people with Motor Neurone Disease.Thank you for your support.Bruce Milligan,Chief Executive Officer
4CORNFLOWER DONOR NEWS — WINTER 2016Bowl forMOBILITYSunday the 17th April raising over 42,000Congratulations to Maria and herteam for their incredible fundraising work. They are all champions.When Maria Turner first met withus about putting on a fundraiser, we had no idea how amazingit would all end up. Especiallywhen she only had eight weeksto prepare for it and she is caringfor her husband Peter who is living with Motor Neurone DiseaseShe didn’t stop, she is a machine, she asked people to putup posters on building sites, sheasked for raffle prizes includinga dinghy (boat). She sold ticketsshe organised the Norman ParkSports & Community Club. Agroup from the CFMEU supported the event, and were a majorfactor in the ultimate success ofthe day. Every one found it hardto say no to Maria!Over 42,000 was raised for people living with Motor NeuroneDisease. These events also raisemuch needed awareness aboutthe disease and also bring newpeople together, which oftenleads to long time relationshipsand friendships.Thanks Maria and all of yoursupport team. You are truly remarkable.Coming soonFriday September 2nd theBrookwater Golf Day will beheld at the fabulous Brookwater Golf Club. This is aCommunity Fund Raiser insupport of MND QLDThey are also holding a 10,000 raffle draw, dinnerand an auction. The golf dayis sold out!
5CORNFLOWER DONOR NEWS — WINTER 2016DRINK Tea for MNDMotor Neurone Diseaseis a highly debilitatingneurological conditionwhich leads to total lossof ability to walk, speak,swallow, and breath.NAB Bank held a National morning tea to raisefunds for MNDAQ.One of their long term colleagues is living with Motor Neurone Disease and they all rallied aroundhim and his family. Not only did they put on thefantastic morning tea, but the NAB bank had alarge contingent of walkers at the Walk to D ‘Feet.We are so grateful to the family for arranging thismorning.Once diagnosed,the MND patient will onaverage only survivea further 2 – 4 years.Guanaba 10,000CLIMB EVERY MOUNTAINComing soonOn 6th August, Jim is planningsomething incredible for MotorNeurone Disease Associationof Queensland. He plans tohike a total vertical elevationof 10,000 metres to honourhis friend Tony, who passedaway from MND in early 2015.“It was quite confronting tosee the rapid decline in Tony’shealth. His family have told methat Motor Neurone DiseaseAssociation of Queenslandwere a great support to them,”“I have chosen to embark onthis physical challenge to raisesome much needed funds forthis worthy organisation.” Thehike will involve 30 laps fromGuanaba Creek to ‘top camp’.this is the equivalent of summiting Everest from base campthree times, non-stop for about24 hours!SUPPORT JIM https://give.everydayhero.com/au/guanaba-10-000#/? k k784hr
6CORNFLOWER DONOR NEWS — WINTER 2016The day I willNEVER FORGETOn 24 April 2016, I lost my bestfriend and my hero, my amazingfather David Robinson who foughta horrific battle for 4 years withMotor Neurone Disease. He wasjust 59 years old and weighed approximately 45 kg at the end.My father did not drink or smoke.He was highly active, performedweight training, swimming andskipping every morning, as wellas Falun Gong, tai chi and meditation. He was fit, maintaineda healthy weight and enjoyed abalanced diet, and was rarelysick. He had an infectious anddelightful sense of humour, andan enormous zest and enthusiasm for life, which is how I willalways remember him.In 2012, we took a family holiday to New Zealand. At this time,he complained of a developingimpediment, he believed hisspeech was slurring. Howeverinitially it was unnoticeable toanyone else but himself. Overthe following months, the slurring of his speech and difficultiesswallowing increased. He beganexperiencing difficulties holdingobjects and using his hands dueto weakness of the hand muscles. He also experienced weakness of the tongue and throatmuscles, as well as cramps andmuscle twitching.He visited a doctor and was referred to a neurologist who diagnosed him with bulbar onsetMotor Neurone Disease in early2013. I remember Googling “Motor Neurone Disease” and reading about it for the first time onWikipedia. At the time it did noteven feel real. My father wasdetermined for the diagnosis tobe incorrect, a mistake, and hefought relentlessly.As the disease rapidly progressed, I watched my determined father struggle to thepoint of exhaustion every single day to attempt to do all ofthe normal everyday activitiesthat we usually take for granted, such as ingesting solids andliquids, going to the bathroom,showering, dressing, communicating, walking and even holdingup his head to see. It is a trulydevastating and undignified wayfor anybody to live, and it is incredibly painful to watch a lovedone suffer this way. My fatherwas so brave, he kept his spiritand amazing sense of humourright until the very end.In April this year I said my finalgoodbye as we laid him to restat peace at last. However thereis an agonising, unfillable voidleft in all of my family’s hearts,as he was taken from us far tooyoung and far too soon, and wehad so much more love and happy memories to share with him.My selfless father fought for myfamily for 4 long years. And nowit is my turn to fight for him, tofight for a cure. I am currently spearheading an initiative toraise awareness for Motor Neurone Disease. I recently held amorning tea event “Drink Tea forMND” in Noosa on 28 June 2016,with all proceeds going directlyto the Motor Neurone DiseaseAssociation of Queensland. I havebeen published in the SunshineCoast Daily, The Noosa Newsand I have appeared by radio on96.1 Zinc FM to discuss MotorNeurone Disease. A cure is outthere, and I strongly believe thattogether we can change the future of Motor Neurone Disease.Rest in peace, Daddy. I will loveyou always.”
7CORNFLOWER DONOR NEWS — WINTER 2016HSH LawyersDrink Tea For MNDOn Tuesday 28 June 2016, Belinda Robinson, solicitor of HSHLawyers held a “Drink Tea forMND Fundraiser” at Noosa Careat Tewantin.The fundraiser was held in memory of her father David Robinsonwho passed away on 24 April2016 after suffering Motor Neurone Disease for 4 years.Belinda spoke about the devastating impacts of Motor NeuroneDisease, the symptoms and thestatistics, the many different waysthat people can support the MotorNeurone Disease Association ofQueensland, relayed her personal story in relation to watching aloved one suffer from the diseaseand explained the symbolism behind the blue cornflower.Ms Theodora Garwood, real estate agent from Salt 4 Property,recited a heartfelt poem writtenby her brother Mr George Demos, who is suffering from MotorNeurone Disease.Mr Bradley Miller, Regional Adviser from the Motor NeuroneDisease Association of Queensland, spoke briefly about MotorNeurone Disease and thankedeveryone for attending.There was cake, tea and coffeeall around provided by the management of Noosa Care. Severalpeople had travelled to the eventbecause they had a loved onewho had formerly suffered from,or was currently suffering from,Motor Neurone Disease.A number of people signed upto the Motor Neurone DiseaseAssociation of Queensland andmany sported a blue cornflowerbrooch for the occasion.Over 800 was raised on the day,an absolutely fantastic effort. Welook forward to next year’s DrinkTea for MND event!Providing MotorNeurone Diseasecare is a full-timejob. Most carersprovide 7.5 hoursof care per day
8CORNFLOWER DONOR NEWS — FALL 2016a walk inHelping raise much-needed fundswill beTOOWOOMBAThe Toowoomba community was invitedto spend a Sunday morning in picturesqueQueens Park while raising much-neededfunds for the Motor Neurone Disease Association of Queensland.The Walk to D-Feet MND Toowoomba eventwas held on Sunday, March 20 at the QueensPark Botanic Gardens.Walk to D-Feet MND is the flagship event ofthe MND Association of Queensland.With the help of a team of Volunteers to manage the event it was not only financially a success but the camaraderie was truly inspirational.Due to a lack of resources we were thinkingof cancelling the event but Ben and his sisterJessica along with Kerrie and a small groupof locals put on a magnificent day.They even managed to put on clear blue sky,warm temperatures, entertainment, foodballoons and lots of walkers dressed in cornflower blue including babies, puppies married couples, families and the elderly somein wheel chairs it was very inspiring in deed.Well done!If you missed this year, you must come alongin 2017.
CORNFLOWER DONOR NEWS — FALL 2016the parkA big thank you to our entertainer on the day singer and guitarist Owen Ray, Raydonates his time to MNDAQ and is always the consummate entertainer9
10CORNFLOWERCORNFLOWERDONORDONORNEWSNEWS— WINTER— FALL 2016BRISBANEWalk To D-Feet MND’ Brisbane was held onSunday May 15th at 10am Roma Street Parklands, Celebration lawnIt was a 3km (approx) walk around the glorious park lands, some did one lap other’s didten laps. Some ran, some walked and somewere pushed. Puppies were on leads. Wewere entertainment by Blue Harmony from9.30am through to the finish of the day. If youare looking for something unusual, fun andbeautiful they are an amazing Blue Grassduo, with Members: Kay Armstrong - vocals,banjo, and double bass. Roger Brand - guitar,harmonica and vocals.The Walk was the biggest turn out so far, andthe weather was perfect, we couldn’t havegot a more perfect autumn day. The NovaSandman’s turned up in their van to add tothe colour of the day with free snacks andtreats.The Harley Davidsons (HOG) were there onceagain supporting MNDAQ roaring into thepark in the morning to rev us all up. Jill andthe riders always put on a great show; youcan read more about our upcoming HOG ridein this newsletter.This year there were many young people attending the event some in memory of familymembers others with their families and a biggroup of walkers were from St Pauls College.The total from thetwo walks raisedjust under 45,000
CORNFLOWER DONOR NEWS — FALLWINTER2016201611
12CORNFLOWER DONOR NEWS — WINTER 2016Coming soon – Sunday October 16Gasoline Alley CharityHOG RideThis event is not only fun, butraises much needed funds tosupport people living with MNDhere in QLD.This year we are very excitedto be partnering with MND andME FOUNDATION in this annualevent. Please note we have 120pillion riders’ spaces available,so get in early, with your registration. This year’s ride willaround the beautiful Scenic Rimwith morning tea and lunch provided in secret locations.You can go to the Every Day Heroregistration page or phone theoffice on 07 harityride2016Thank you to all of ourfundraisers’ you are trueChampions, from those ofyou who are gift wrapping inshopping centres to thoseof you running car rally’sand bowling days. Mountainclimbs and running. We require just over 1million dollars each year to continuewith the level of service weare currently providing, wewould of course like to increase our regional advisorservice and add other necessary services like respitefor carers, but that would require a significant increasein income for MNDAQ. TheState Government providesus with just 50,000 per yearto run our telephone supportservice three days per week,which of course is vital tothe MND community so theydo not feel isolated, fearfuland alone. The rest is raisedthrough people just like youtirelessly volunteering out inthe community.High School studentTrudi Mac did aterrific job with herraffle and schoolfundraising. Sheis also writing abook which will bereleased soon.
13CORNFLOWER DONOR NEWS — WINTER 2016North Brisbane &Caboolture Support GroupWe recently held a Drink Tea for MND afternoon at Lindmar Garden in Morayfield. We were thrilled withthe 1,200.00 raised to assist with the purchase of much needed equipment for people living with MotorNeurone Disease. What a wonderful way to spend a perfect Queensland afternoon with friends, sippingtea and being entertained by Bohemian Dreams in a ‘dreamy’ garden atmosphere.Cough Assist machinesand hoists greatly help theMND suffererAs MND progressively weakensthe muscles, Cough Assistsaid breathing and hoists areessential aids to mobilityThank you for yourgenerous donationto MND QLDHonda FoundationCGFSlater & GordonMaroochy RSL
14CORNFLOWER DONOR NEWS — WINTER 2016Gold Coast Support GroupsMND Gold Coast Support Groupgatherings were attended by asmall group of carers and a couple of clients.Sadly we lost two people in thelast year who eventually losttheir brave battle with MotorNeurone Disease but the NeverGave Up . I’ve always said ‘wedon’t want new members’ butwe know they are out there. Weare all volunteers who have beentouched by MND through lovedones and friends, we are thereto offer our support to thosewho feel that they need somehelp. We had a large gatheringfor our Christmas lunch at TheItalo Club, Carrara, thoroughlyenjoyed by all. Unfortunately weare unable to have future meetings at the Club due to a changein their opening times.We have found a new home forour gatherings at Surfers Paradise Golf Club, Fairways Drive,Carrara, just across the road,and will be meeting every second month. We welcome anyoneto join us for lunch and a chat in2016.Best wishes to everyone for2016.Carers and Support GroupsThe Carers and Support Groupshave been continuing on as usual, and a big thank you is given tothose who conduct and participate in these groups as they areinvaluable to an organisation likeours – the feedback that we getis very positive so we greatly appreciative those involved. Theseare held all in various parts ofQueensland, and in such a bigState like ours where you can feellost and looking for a solution, itis important that our families begiven a forum to meet with others and share experiences.The Gold Coast Support Groupfound a new home for their gatherings at the Surfers ParadiseGolf Club, Carrara, just across theroad from the old venue – they willbe meeting at 1pm on the secondSaturday of every second month.They welcome anyone to join themfor lunch and a chat in 2016.Stay tuned for more Carers andSupport Groups to come, andfeel free to email brad@mndaq.org.au or call 07 3372 9004 forupcoming locations, dates andtimes.
15CORNFLOWER DONOR NEWS — WINTER 2016PEOPLE POWERLobbying for the rights ofpeople living with MNDIn the lead-up to the Federal Election we were delighted to see both major political parties pledgingtheir support for MND. It is reassuring to know thatthe collective efforts of the MND community arekeeping Motor Neurone Disease on the politicalradar.MND Australia seeks five commitments from ourpoliticians to improve the lives of people with MNDand their families. These priorities for care andresearch are outlined in the MND Australia Action Framework, which can be downloaded frommndaustralia.org/framework Increased investment in research Development of National MND Guidelines Improvements to aged and disability care Timely access to a full range of assistive technology A specific commitment to fund specialist MNDmultidisciplinary clinic coordinatorsAs we begin a new political term it is important thatwe keep up the pressure to ensure that MND careand research remain on the political agenda. Weinvite every Australian who has been touched byMND to meet, write, call and/or email their localMP to ask for their commitme
are fundraising for us; and keep-ing the organisation functioning from an administration point of view. We really do punch above our weight, and the resources that we have to get the job done! On 15 May 2016 one of our major fundraising and awareness rais-ing events, Walk to D-Feet, was
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Le genou de Lucy. Odile Jacob. 1999. Coppens Y. Pré-textes. L’homme préhistorique en morceaux. Eds Odile Jacob. 2011. Costentin J., Delaveau P. Café, thé, chocolat, les bons effets sur le cerveau et pour le corps. Editions Odile Jacob. 2010. 3 Crawford M., Marsh D. The driving force : food in human evolution and the future.
