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Guillain-Barré Syndrome SUPPORT GROUP NEW ZEALAND TRUST

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Guillain-Barré Syndrome SUPPORT GROUP NEW ZEALAND TRUST Guillain-Barré Syndrome SUPPORT GROUP NEW ZEALAND TRUST Registered N.Z Charity No. CC20639 Charities Act 2005 Information published in this Newsletter is for educational purposes only and should not be considered as medical advice, diagnosis or treatment of Guillain-Barré Syndrome, CIDP, related neuropathies or any other medical condition. NEWSLETTER DECEMBER 2012 If undelivered please return to: Chris Hewlett 51 Killen Road, RD 2 Katikati, 3178 New Zealand Patron Hon. Steve Chadwick Ph: (04) 385 0240 President Bob Stothart 4/326 The Terrace, Wellington, 6011 Email: [email protected] Ph/Fax: (06) 751 1014 National Coordinator Jenny Murray, QSM 27 Grenville Street, New Plymouth, 4310 Email: [email protected] 113 Weka Road, Mariri, RD 2, Upper Moutere, Ph/fax: (03) 526 6076 Secretary Tony Pearson Nelson, 7175 Email: [email protected] Ph: (06) 357 8436 Treasurer Peter Scott P.O. Box 4162, Palmerston North, 4442 Email: [email protected] Ph: (07) 549 0931 Newsletter Editor Chris Hewlett 51 Killen Road, RD 2, Katikati, 3178 Email: [email protected] 5 Fraser Street, Ph: (03) 449 2232 Publicity Officer Maria De Cort Clyde, 9330 EMail:[email protected] Gareth Parry Medical Advisor ONZM.MD.FRACP.ChB Web Site Support Education Research www.gbsnz.org.nz Medical Advisory Board Board of Trustees Dr Gareth Parry ONZM, MB, ChB, FRACP Professor Emeritus, Department of Neurology, University of Minnesota, USA. Dr Suzie Mudge Director & Physiotherapist Neuro Rehab Results Bob Stothart Tony Pearson Ken Daniels Senior Lecturer/Senior Research Officer Health and Rehabilitation Research Institute, AUT University Dr Chris Lynch Neurologist and Neurophysiologist at Waikato Hospital Honorary Senior Clinical Lecturer at the Auckland Medical School Waikato Campus Peter Scott Dr John Podd John Davies Dr Pralene Maharaj Pathology Registrar ADHB And Trainee in Pathology with the Royal College of Pathologists Australasia Member of GBS Support Group since contracting GBS in 2006 Dr Dean Kilfoyle Don Martin Chris Hewlett Neurologist Auckland City Hospital Auckland District Health Board Dr. Annette Forrest ICU Consultant MBChB, BPharm, Dip ag & Vet Pharm Maria De Cort Meike Schmidt-Meiburg Chris Hewlett Meike Schmidt - Meiberg Grant McKay has gone from house husband to king of the road. He is loving his new found independence and freedom. Codicil to an existing Will If you have already made a Will you can still help the Guillain Barré Syndrome Support Group by adding a codicil to your Will. If you would like further information or would like to talk to a Trustee of the Group about making a bequest to the Charity please contact us on 03 526 6076. We do advise consulting with your legal advisor before completing this codicil form Please take this form to your legal advisor I ………………………………………………………………………………… (Name) of ………………………………………………………………………………… …………………………………………………………………………………… (Address) Declare this to be a …………….. (first/second) codicil to my Will dated ……/……/……. In addition to any legacies given in my said Will I give to the Guillain Barré Syndrome Support Group New Zealand Trust, of 113 Weka Road, Mariri, RD2, Upper Moutere, Nelson 7175 (or any other premises which the Support Group may hereafter occupy) a charity registered in New Zealand No. CC20639, A share of …………………... of my estate or the sum of NZ$ ……………. and/or ……………………………………………………………………………….. (a specific sum) to be used for general purposes and I declare that the receipt of the Treasurer or duly authorized officer shall be full and sufficient discharge. * In all other aspects I confirm my said Will and all other codicils thereto. *please complete as required and cross out those options not required. Signed ………………………………………. Signed by the above named in our presence and witnessed by us in the presence of him/her and each other Witnessed by: Witnessed by: Signature……………………………… Signature………………………………. Name …………………………………. Name………………………………….. Address……………………………….. Address……………………………….. ………………………………………… ……………………………………….. ………………………………………… ……………………………………….. Occupation……………………………. Occupation…………………………... Date…../…../…….. Date…../…../…….. A very big thank you to Marie Oliver who left $100 to the Support Group in her will. We appreciate this very generous gesture Obituaries Since the last newsletter we have received word on the passing of some of our members. George Wadsworth died 4th September. Henry C Senior died October aged 91 years Pat Baker died 9th October. Marie Oliver died September aged 90. We send our heartfelt sympathy to the families of these members. Editors Note 11 years and Annual subs are now due and a Face Book and Web pages for 3 days after form is included in this magazine. maximum exposure. getting GBS I Please get these into Peter sooner found myself rather than later. Due to costs and We have had a few cases of GBS incapacitated the small income the Trust has to reported in the BOP/Waikato area once again operate on we can longer send to lately. Talking with others at our and reliant on those members who are not luncheon this seems to be the friends and family for my well financial. time of year for outbreaks in our being. Once stitched up, my ears regions which makes us ask the suffered badly, as those who We have had another successful question WHY? Is it because think I am too old to be doing a Bay of Plenty get together, with immune systems are down after bit of off road motorcycling told 17 people (including partners and winter or what? Can our medical me so. My cousins response to friends) coming to our Christmas board provide a theory? my aunt was “And she‟s how luncheon. Thank you everyone old”. Back on crutches and for making these such fun and Our best wishes for a speedy confined to keeping my leg successful events over the year. If recovery go out to these people elevated for the next few weeks, I anyone in would like to organise and their families. shall try and not go crazy with something in their area I am boredom. At least I have had the happy to help get you started. All I wish you all a very merry magazine to produce. Might not you need is a suitable venue, the Christmas and happy New Year be doing any dancing at the work desire to meet fellow sufferers Christmas party this year, which and a liking for coffee and cake. Chris some may say is a good thing. These events can be put on our Presidents Paragraph: My wife Malaghan Institute. While GBS words half of those there had Margaret and was not mentioned there was encountered GBS or CIDP and I attended a much discussion about other wanted to understand more about Neurological neurological conditions. What their particular malady by Foundation presentation at the was really significant was the attending the symposium. I Wellington Opera House quality of research being would leap for joy if our recently. It was part of the undertaken in New Zealand, conference, being held next April foundation's Progress Through including stem cell research and in Wellington, attracted a 50% Research programme which they the significant progress that is response from people who had have presented in Auckland, being made on a number of never been before. This is the Wellington, Christchurch and disabling conditions. We all only conference on GBS/CIDP Dunedin. The Wellinton benefit from this internationally held in New Zealand and we occasion was MC'ed by Kevin recognised research. work hard to assemble a Milne in a lively and entertaining programme of informative manner contributing to an I was not able to attend the speakers. If you possibly can, informative and valuable GBS/CIDP International regular attender or first timer, evening. Speakers included Dr Foundation's symposium in Fort come to the conference and I Jon Simcock and Auckland Worth in October but speaking guarantee you will benefit from neurologist, Associate Professor with Professor Gareth Parry who it. Bronwen Connor a researcher was there, he told me there were from Auckland and Associate about 400 delegates 200 of whom Professor Anne La Flamme of the were first time attenders. In other Bob Secretary’s Jottings threatening the team‟s medical structure and operation of our competency THAT‟S when we will website to the Group (a policy that is see a change in the number of being applied to all Group‟s who contacts stemming from information operate their websites under the about the Group passed to their NZORD‟s auspices). As I mentioned patients by the medical teams. in the last Newsletter such skills don‟t necessarily come naturally and The April 2013 Conference kicks off so it was agreed we should assemble on the Friday afternoon with the first in Wellington for a day‟s tutorial. So “From the very beginning the of what I hope will be many now, hopefully, we can pretty much medical staff gave us literature from gatherings around the country to run our website within the Group. the GBS Support Group and provide the skills and guidance to Ben is still helping us develop the nd encouraged us to make contact. So I those who are willing to volunteer “new look” 2 generation website did and spoke to a very helpful for this most important role. I look and will continue to handle some of lady and joined the online forward to joining that first gathering the tricky “geeky” bits of stuff that Facebook group. I was instantly and meeting you there. the system‟s servers require – but if overwhelmed by the kindness and you spot a gaff on the site let any of support shown to me by members Since the last Newsletter I have lost a us “Webexperts” know – because it of the group who had had GBS or good friend, John Mason. John and I will be our fault! still had it or CIDP and then met at our local Sailing Club here in continued to offer us support Motueka soon after I arrived in NZ.
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