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ME/CFS South Australia Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
Disclaimer
ME/CFS South Australia Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
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President's Report
Monday 5 September 2016
Here is Society President Emma Wing's report, presented at the Annual General Meeting held on Saturday 27 August 2016:
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President's Report
Welcome. Thank you all for coming today. For those of you who don't know me I'm Emma Wing, Acting President. I would like to acknowledge all those too ill to come today and wish them the best in good health.
The first thing I would like to tell you all is that we have a new office. Yay!! At 19 North Terrace, Hackney. It’s three rooms, and thanks to member and committee nominee, Kim Lawless, who secured this for us at an unbelievably generously low price. We are so excited that after a long six months of searching with everything being above our budget; we are so pleased to have an office. Our official OPEN DAY! is Saturday the 15th October and special guest will be Senator Nick Xenophon. Watch out for more details to come. As of this week the office is now back open from 11-3 on Wednesdays.
Lack of medical and government funded support has mainly been a point of negativity in the past. However, this year we have seen some positive changes and developments. We have had positive meetings with Honourable Stephen Wade, Honourable Stephen Marshall and Honourable Kelly Vincent. Letters have been written to MP Rebecca Sharkie, as well as Senator Scott Ludlam and Senator Nick Xenophon. We have had Dr Katia Ferrar’s research project at Uni SA; Max Nelson is still looking for participants for his two-day bike test; and at SAHMRI Dr Mike Musker is still looking for participants for the cytokine and leptin study.
In the meantime, support of a select group of doctors and the talk of a new clinic is very exciting. But I’ll leave that to Dr Wauchope to talk about.
Society volunteers are mostly sufferers and have been volunteering a long time but are still doing a fantastic job. If you'd like to volunteer, please see one of us after the meeting. Some tasks you could help with are answering phones, folding and stuffing envelopes, database entry, grant writing, etc. Although we have had no office for the first six months of this year our core services have still been working well. There has still been a lot going on behind the scenes. And I think you should be proud of what the committee and volunteers have achieved.
So this year a lot has changed. Penny, Penelope, Anne and Sheree joined the committee at the last AGM and it’s been great having some fresh enthusiastic although sick, hard-working new blood. James Hackett after nine years as President decided his time had come and he needed to concentrate more on his health and personal life. So it was with a heavy heart when we had to accept his resignation and announce his departure. He did a fantastic job in his presidency's role, implementing new ideas like the membership for donation drive, SMS reminder messages, implementing a modern format to newsletters, setting up the national ME/CFS Australia Facebook page and the SA Facebook page and having a more structured approach to goals and strategic planning. He also headed the move to Hindmarsh. Although James took over as a caretaker President I think he did much more than just look after the Society. It was a pleasure working with him and we wish him all the best with his health and with whatever he does in the future. Spencer also decided to resign from the committee earlier this year. He was on the committee for nine years. Spen was a great asset to the Society applying and being successful with numerous grant applications. He and Grazyna always opened their home for our committee meetings with warm hearts and yummy desserts. This will be Peter Mitchell's last year as well. He has decided to resign and concentrate his time on his passion of writing novels and spending precious time with his grandchildren. Peter was on the committee for twelve years. As well as being on the SA committee Peter also served on the national board for ten years. He has been heavily involved recently with bringing the national Board back up to a fully functioning working Board. Peter will be greatly missed. Kim Lawless has been nominated and joined the committee. John Leverenz has been nominated after volunteering for a number of years. It'll be great to have another Leverenz on the committee.
Since James resigned I have had to make some difficult choices. At the AGM last year it was my intention to serve one more year. Then James resigned and I took on the President position. My dilemma was, do I still resign, because if I did it would be leaving basically a new committee with no old members to assist. If I stayed on I would probably be putting my own health at further risk with the increased work. So after months of agonising and wanting to do the best for the Society and the new committee, I have decided to resign and do what is best for me. It’s been an extremely hard decision and there has been many tears and sleepless nights. After thirteen, nearly fourteen years on the committee and twenty years of being involved with the Society in some way or another, I feel it is time to resign and move on to something different. The Society has been a huge part of my life and there will be a pretty big hole left by it. I will continue to remain involved with the committee and volunteers, to offer advice and be supportive where and when I can. I've made a number of friends over the years and it’s going to be extremely hard to close this chapter. However, those of you who know me know my passion is wildlife and I'd like to follow that passion more and make some new friends and broaden my social circle. Although I have been sicker for longer than I have been well, if I hadn't been sick I wouldn't have met the friends I have today. I am very grateful for what the Society has taught me, shown me and given me. I will be forever thankful. I have no doubt that the new committee will thrive, excel and do wonderful things and I along with you members can look forward to seeing what they can do. I think it’s an exciting time for the Society being lucky enough to have a fresh new committee and our new office.
So my thanks go to James. Like I said a minute ago, the Society is extremely grateful to you for all the hours of work, support and friendship you have provided to our members and committee. You have shown strength, diversity and great leadership and we are sad to see you go. Peter, you always have had wise words, been patient, been a great listener, and advisor. Spencer, thank you for all your hard work and effort you've given to the Society. We wish you and Grazyna all the very best.
I would like to let you know of our **List of Achievements** accomplished over this past year, but many focused in and around awareness week in May.
- Ian McNamara’s radio show, Australia All Over (interview)
- Sunbury Radio, Vic (interview)
- ABC radio morning news (interview)
- ABC 891 Mornings interview with Ali Clarke and guest Kris Massie and our own Penelope McMillan
- Broken Hill ABC radio interview
- Concordia College - school assembly presentation with Jason Kupke and students
- Blue lapel ribbons worn by state MPs during parliamentary sitting 17-19th May
- Badge Day with Concordia College school kids at Unley Shopping Centre. The shopping centre waived the fees they would normally charge groups for badge days
- 31 pairs of shoes were sent from Adelaide to Melbourne for the 'Millions Missing' global event
- Fashion parade and fundraiser held and run by the Colonel Light Gardens Church of Christ where $1000 was raised, which we donated to the new clinic. We also found out an anonymous donor matched the $1000 so that’s $2000 for the new clinic.
- National Pharmacies Vital Health article written with help from Penelope Del Fante and published in their online magazine, with a readership of 80,000
- Pooraka Primary School held a 'sock it to me' Crazy Sock/Pyjama fundraiser day, with a follow-up article in the Northern Messenger
- For international ME/CFS awareness month -
SA Power Network was lit up courtesy of the efforts of member, Leonie Potgieter;
Adelaide Oval was lit up courtesy of the efforts of member Jac Creedon
Financially I'll leave Sheree to give the financial report, but I just wanted to mention a few things. Membership for donation is still working well. We've received some generous donations since July. Simon Catlow of Galpins has done our audit and financial reports this year with no charge, which is incredibly generous. Adhesive Labels provided us with new badge day stickers free of charge. And now with our new office rent really cheap the books are looking good. However, I'll leave Sheree to report further.
Thanks to volunteers:
- John Leverenz for your amazing work. Always committed, dedicated and passionate. Nothing is ever too hard for you. You help anyone no matter what their situation is and it’s been a pleasure knowing you and working with you.
- Peter Scott for your work on Talking Point and the website, and always making email conversations interesting, hilarious and full of pun-ly fun.
- Mel Smith for your work on being our email manager. You do a great job replying to emails. Sometimes easy, sometimes challenging. Thank you.
- Other Committee members, Penelope, Penny, Anne and Sheree. It’s been a great year working with you all and getting to know you. I feel positive things will come from having you all continue on the committee.
- Judy Rhodes and Romana Stransky for their work as Facebook administrators on our national Facebook page. You are always on top of things, you're professional, friendly and courteous and you don't take any 'BS' from anyone. I know it can be a very challenging job sometimes but you always handle yourselves as skilled public relations pros.
- Jen Bradley for your IT/DVD work and Facebook administration, and contributing.
- Colin Northey for attending and recording seminars. No one else could stand for two hours and do what you do.
- Lynda Brett for her help in the office.
- Dave Shepherd for his work in the Yorke Peninsula area with the support group.
Would everyone please give these guys a huge round of applause and show your appreciation to them for the countless hours that they all put in week after week for the Society and its members.
The future is looking good and I can’t wait to see what the new committee can do, along with the new office and the new clinic.
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Registered Charity 3104
Email:
sacfs@sacfs.asn.au
Mailing address:
PO Box 322,
Modbury North,
South Australia 5092
Phone:
1300 128 339
Office Hours:
Monday - Friday,
10am - 4pm
(phone)