roundabout - Muscular Dystrophy SA
Transcription
roundabout - Muscular Dystrophy SA
roundabout newsletter of the muscular dystrophy association sa autumn 2010 cover story: mda in the fringe parade Friday the 19th of February saw MDA participate in the Adelaide Fringe Parade for the very first time. A real highlight for the year to many fringe loving people, the parade signifies the official start to the festival. The Fringe Parade featured hundreds of performers from community, arts, social and school groups presenting concepts, ideas and artistic statements to over 80,000 people. Many of our Board members participated in the Fringe Parade, as did many other friends of MDA, including the kids from our Camp Capacity. The real attraction to our float were our wheelie bins; beautifully converted into small cars by our own Camp Capacity kids with the help of our CEO Paul and the Camp Capacity staff. Surrounded by the media and with a turn out of a fantastic 43 people on the MDA float; it was a spectacular MDA awareness raising evening. (story continued; page 10) Cover photograph taken by Michael Marshall, The Advertiser contents page cover story 2 bow tie bears 12 ceo’s report 3 new staff 13 pre-fringe parade bash 4 mots 14 twilight walk 6 positions vacant: volunteers 14 camp capacity 8 calendar of events 15 mda in the fringe parade 10 red bowtique 15 news team 11 donation appeal 16 Muscular Dystrophy Association Inc 36-38 Henley Beach Rd Mile End, SA, 5031 mail to: GPO Box 414 Adelaide SA 5001 ph: (08) 8234-5266 fax: (08) 8234-5866 [email protected] 2 roundabout www.mdasa.org.au The opinions and views expressed in Roundabout are not necessarily those of Muscular Dystrophy Association Inc. Care has been taken in the preparation of content, but MDA accepts no responsibility for detriment whatsoever arising from the reliance of content contained herein. ceo’s report Welcome everyone to the latest edition of Roundabout – we hope you enjoy it and please feel free to provide us with your comments and feedback. I hope all of our readers managed to have a great break over the holiday season and that 2010 is the year you have been hoping for! 2010 promises to be a good year for MDA too. Over the last few years MDA has been working hard to define what it is we want to achieve and to clarify what we should be focussing on. Regular readers may have read about the strategic plan and its 5 focus areas of Services, Research, Volunteers, Finance and Relationships in past issues of Roundabout, and seen the work we have been doing in those areas. This will continue through 2010 and MDA will also be taking advantage of many opportunities to raise its profile and to show people who we are and how people with a neuromuscular disorder are just as much a part of the community as any other person. In this Roundabout you can read about our participation in the Fringe Opening Parade and see some of the photos from the evening. These sorts of events focus on developing our relationships in the community. We believe that the more people who see and hear about us in these positive ways the more likely we are to receive a positive response when people with a neuromuscular disorder are in the community, when we seek support, and when we seek funds. We believe the more we are out there, the more MDA and people with a neuromuscular disorder generally, are likely to be supported. MDA is also working hard on strengthening its finances. We have a plan to grow in order to provide even better services to people with a neuromuscular disorder regardless of where they live in SA. Our plan is to spread these services across SA and the NT as funds allow. In addition to this, the new MDA Research Foundation trustees, elected at the last AGM, as well as the MDA Board, have all committed to increase the level of research support from MDA. This research, whether it be medical, scientific or social will all be focussed on improving circumstances for people with a neuromuscular disorder. As you would imagine, this renewed focus and energy stands to see MDA grow in the future. Indeed, as I have written in Roundabout previously it is the only way I can imagine we will continue to be viable and of relevance to our clients and members. This is why you may have noticed that we have been working to expand our income base to add a variety of events to raise further funds and to grow our profile in the community. This will continue into the future and we would like you to join with us. To use a phrase that is becoming common around the MDA office, we would like you to join us and ‘Put your Muscles behind Muscular Dystrophy!’ Feel free to contact MDA and see what you might be able to do to help. Cheers, Paul Creedon CEO roundabout 3 pre-fringe parade bash Friday the 19th of February was a busy night for staff, volunteers and friends of MDA. As already mentioned, 43 of us participated in the Fringe Parade in front of over 80,000 people, before this however we put on a fantastic event at Hindmarsh Square in conjunction with ‘Save Our Festival State’. The ‘Pre-Fringe Parade Bash and Sausage Sizzle’ was a real success and featured fantastic live entertainment, copious amounts of food and beverage as well as a wine tasting stand thanks to Wirra Wirra wines. Although primarily a fundraiser, this was also a fantastic chance to raise MDA’s public profile. The entertainment included a sneak peak of performers who were soon to perform in the Fringe itself. The atmosphere was fantastic all night and a buzz of excitement was in the air when people started to get ready for their participation in the fringe parade. Our new balloons and red shirts were proudly shown off by those leaving the pre-bash for the parade and it looked fantastic to see our group walking all together to support our cause! The night was a real success and was thoroughly enjoyed by all; thank you to all volunteers and staff who helped on the night and for all those that attended. 4 roundabout roundabout 5 6 roundabout twilight walk Sunday February 28th was a perfect opportunity to again ‘put your muscles behind muscular dystrophy’ for the busy month of February 2010. Our inaugural Twilight Walk was a fantastic success with over 140 attendees, many of whom are still raving about the amazing entertainment, food, wine, venue, sunset and overall atmosphere that was present on the night. d The event was based at the very quaint Ozone Reserve in Henley Beach South, with a beautiful view of the coast and the start to a fantastic wheelchair accessible path leading to the West Beach Surf Life Saving Club. This was the path that led us and our dogs just after 6pm on the very relaxing Twilight Walk; the official part of the evening. Liam Garcia-Hardman’s fantastic jazz trio welcomed our return to the reserve at 7pm, along with the aromas of fantastic Mediterranean cuisine. The atmosphere was electric as the sun set over the water as we enjoyed the food and wine. d Twilight Walk 2010 was a fantastic opportunity to raise funds and awareness for MDA in a new area of the city. Thank you to all staff and volunteers who made the event so fantastic. Thank you also to the Pomeroy family for lending us their MDA-coloured VW combie van to have on display and add to the atmosphere on the night. Last but not least, thank you to all of you who attended the evening, we were overwhelmed by the fantastic support we received! roundabout 7 camp capacity 2010 ‘wacky wheelchair winternats’ This year’s camp was one of speed, adrenaline…. and a touch of coolness. The Wacky Wheelchair Winternats brought coolness to a super hot week of camp. Like every year, amongst it all, was a group of amazing individuals who joined forces (until the teams were formed at least) on the hill at Mylor, to create a week of fun, friendship and memories. 74 people, made up of campers, carers and siblings descended upon the Mylor campsite to make the MDA 2010 Camp Capacity not only happen, but also be a runaway success. The theme Wacky Wheelchair Winternats involved cars, winter and anything wacky to go with them… . Day One- Let the teams be unleashed…. The eight teams, named after wintery things or car racing essentials, were ready for battle with a blank sheet of canvas screaming out with possibilities. The creativity began to soar as team flags emerged. After a cool swim in the pool, the evening saw the first developments of the hugely successful ‘Pimp My Wheelie Bin’. More creativity was had when campers started to make their own masks for the upcoming masquerade ball. Ideas, paint, feathers and glitter went flying as everyone was trying their best to outdo each other. Some even made two or three masks to do Hollywood style wardrobe changes during the ball. . Day Two- One for all, all for one…..let the skirmishing begin As the weather began to heat up the first half of the day was filled with a trip to the Birdwood National Motor Museum. A ‘Spot the T-Bird’ game at the museum kept all who attended enthused. The afternoon then erupted with laser firepower - a valiant shoot out taking down the last of the soldiers! The afternoon also included the Flying Fox and the finishing touches to masks, ready for the evenings Masquerade Ball. For those who do not know, Camp Capacity has now been running for an amazing ten years. We celebrated this milestone by having a masquerade ball and quiz night. The Masquerade Ball came alive and all masks were of an exceptional standard. The night ended in a sugar rush as the lovely cooks at Mylor made a massive celebratory chocolate cake to mark this impressive milestone and helped to make it one to remember. . Day Three- A cool breeze as the wheelchairs wizz past… Ice-skating and wheelchair sports were the order of the day. Even the wheelchairs went for a spin on the ice! ETSA Park Netball stadium was the setting for an epic battle of Wheelchair Soccer and Gymkhana. Just when you think the day couldn't get any better, the Harley Owners Group (HOGS) came roaring in to the Mylor camp. The HOGS men have been coming to camp for eight years and always make sure that everyone has a ride even if it means making someone give into peer pressure. . If the HOG’s weren’t enough to deafen our ears, the introduction to Singstar may have helped! Poor Kelly had to listen to Britney Spears “Oops, I did it again” at least ten times. 8 roundabout camp capacity 2010 Day Four- Wheelie bin wild….. We decided that we would flip the day’s activities in an attempt to beat the heat. So we slathered ourselves in sunscreen and marched up the Mylor hill to the new High Ropes course and the Big Swing. Those who wanted to beat the heat and the sun ventured back to camp to participate in this years’ treasure hunt. Campers worked together in this challenging hunt ensuring max points for their teams. . After lunch and a cooling ice block, teams were asked to use their creativity skills to pimp eight wheelie bins. We had some very creative designs and everyone got involved. Some of the bins were turned into cars, rockets, or bobsleds. Creativity was aplenty and the judges had their work cut out for them. But the fun of the Pimp My Wheelie Bin did not just end on camp – they were featured in the Fringe opening parade! (see the cover article for more information). We look forward to seeing what they make for the parade in 2011! The last night of camp meant for the youngsters a relaxing night watching movies. For the b oldies, a smorgasbord feast at the Hahndorf Old Mill. . Day Five- Packing up and resting… Tiredness prevailed and the pack up was upon us. The trucks were quickly loaded before the rain could set in (we had very odd weather on this camp). Presentations were made and prizes for 1st, 2nd, and 3rd team. However, the last team was not forgotten. They went home with the infamous wooden spoon. So we said our final goodbyes and boarded the buses for a sleepy trip back home. . Thank you A special mention must be made of Tim and Megan Holman, Becky and Joe Thomas, Matthew McKuen-Taylor and Paul Lumsden who have being coming to Camp Capacity since its beginning in 2000. We thank them for always coming back and hope to see them next year. Camp Capacity would not have happened if it were not for the kind people who give there all to make each camp the best ever. Lisa spent months and months planning this year’s fantastic camp but left us to move back to Tasmania and have a baby. With Lisa gone and René and Amber only starting a week before camp, the lovely Richelle was brought in to make sure that things went as smoothly as possible and so that at least someone knew what was going on. Camp Capacity is not possible without the generous support from various donors, volunteers and individuals. A very grateful thank you to: • • • • • • • • • • Nicola Norman Volunteer carers Barb and the nurses Baptist Centre Campsite, Mylor Mylor staff Bluebus Commuters Kanga Coachlines SA Taxi Trucks ETSA Park Stadium Ice Arena • • • • • • • • • • Birdwood National Motor Museum Harley Owners Group SA Chapter BSS Hire Hahndorf Old Mill Bow Tie Bears Volunteer Events Committee Paul Creedon Andy Sjoberg Two Worlds Collide Doug Smith Push and Power roundabout 9 continued: mda in the fringe parade (continued from page 2) . Participating in the MDA Fringe Parade float on Friday the 19th of February was a positive experience for all involved. According to one of our Fringe participants who lives with a neuromuscular condition; she had never experienced so many people wanting to pay her so much positive attention in her life, especially from the public. This opinion was echoed by many of the participants as the crowds adored our float; with countless smiles, waves and cheers! . For the Parade, we had our new t-shirt and balloon design on display, including our new slogan; ’put your muscles behind muscular dystrophy’ which had a very effective response. People could be heard from the crowd talking about muscular dystrophy and we were all thrilled that we had found another way to get the public talking about it! With awareness comes understanding, with understanding comes support. This was a fantastic opportunity to not only strengthen MDA’s public profile but also to increase the awareness of neuromuscular conditions. We look forward to next year and many more to follow! A full gallery of photos from this event are available on facebook! Simply go to www.facebook.com, log on to your account (or set one up, it is very easy and takes 5 minutes for a basic page). Then enter ‘Muscular Dystrophy South Australia’ into the top right-hand search facility. Once in, click ‘join group’. . By joining our facebook page, you will also be able to keep up to date with the latest events and happenings at MDA!! 10 roundabout news team Wheelchair Sports South Australia held their ‘Push n Powered’ sports finals in Soccer, Touch and Hockey in late November. The 2009 season was a season of fun and fast competitiveness from all involved. This season however, appeared to be no match for the victorious ‘Sixers’ who won the finals for all three sports, big congratulations to…Sam Aforozis, Santo Bongiovanni, Clinton Woodman and Jonathan Ngyuen who are all team members of the ‘Sixers’. Awards were also presented after the finals, with the trophy winners as follows…. HOCKEY TOUCH SOCCER BEST & FAIREST Santo Bongiovanni BEST & FAIREST Santo Bongiovanni BEST & FAIREST Sam Aforozis MOST IMPROVED Jonathan Grigg MOST IMPROVED Chantel Bongiovanni & Jonathan Grigg MOST IMPROVED Nathan Van Roy BEST TEAM PERSON Clinton Woodman BEST TEAM PERSON Tim Holman & Clinton Woodman BEST TEAM PERSON Matthew Clarke TOP SCORER Santo Bongiovanni (47 Goals) TOP SCORER Santo Bongiovanni (26 Tries) TOP SCORER Tim Holman (12 Goals) ROOKIES OF THE YEAR Mitchell Beckett, Chantel Bongiovanni, Caleb Crowden and Hannah Fabig GEORGE MANGAKIS AWARD Aaron Heading and Jane Quick If such trophies and victorious efforts are not enough to congratulate, another eight clients from MDA will be representing both South Australia and Queensland in the National Electric Wheelchair Sports competition. Matthew Clarke, Sam Aforozis, Santo Bongiovanni, Tim Holman, Clinton Woodman, and Chris Spencer will proudly represent South Australia in the NEWS completion against other states. Chantel Bongiovanni and Jonathan Grigg will represent Queensland and compete against other states, including South Australia, which will make for very interesting games! A very big congratulations from MDA! Introducing our partnership with Flight Centre Melbourne St! Mention you are a friend of MDA in booking your upcoming trip with Flight Centre Melbourne st and receive: • • • $100 off international packages! $50 off domestic packages! 5% off tours Flight Centre Melbourne St donate 1% of any sales made in their branch if you mention MDA on booking any flights, accommodation or tours. Flight Centre Melbourne Street 143 Melbourne Street North Adelaide ph: 08 8367 4166 roundabout 11 bow tie bears volunteer committee update Welcome to the Bow Tie Bears first report for 2010. We started the year with 2 visits to Camp Capacity and helped the kids (and adults) with craft sessions. Ready for the Masquerade Ball some campers and carers made masks...and what inventive ideas they all came up with! There were some beautiful masks and some scary ones also. The next day we returned to have another go at craft, decorated CD cases and attempted to make wind chimes. It was all good fun and Bow Tie Bears and we look forward to being involved next year. We got some great ideas from the campers for different craft ideas for Camp Capacity 2011. Melva and myself were lucky enough to stay for tea and await the arrival of the HOGS. That was a terrific experience, watching the kids faces as the Harley Owners took them on many rides around the oval....we even got a ride ourselves! My grand daughter Alyssa said it was a highlight for her and she had 17 rides! It was the BTB's pleasure to be involved with the camp and campers....thank you Client Services for allowing us to be a part of Camp Capacity and for putting on such a fantastic, happy, activity filled week. January 23 saw BTB's at Willunga having a craft stall as part of the Tour Down Under. Our stall was part of a street filled with marquees and colourful stalls. Shirley, Joy, Yvonne , Joy (no 2) set up the stall and it looked very colourful when Melva and I arrived a little later. It was a great day and as well as our fantastic craft we sold fresh biscuits and slices which were very popular. We raised nearly $600 and went home tired and weary, but very pleased with our efforts. We are very excited to announce our next event! MUSIC QUIZ NIGHT will be held on 29th April at The Governor Hindmarsh Hotel (The Gov) who have very kindly donated their venue. The evening will feature live singers and musicians who are all donating their time and talents. All questions will be music related from the 40's to the ‘noughties’. Save the date in your diary and feel free to ring MDA on 8234 5266 to book your table of 8-10. Of course we will have great prizes to be won.....and you should be able to catch the tram to The Gov by then! Look forward to seeing you there. Janice Phillips Chairperson Bow Tie Bears Volunteer Events Committee Music Quiz Night Bookings essential! call MDA on 8234 5266 Thursday April 29 at The Governor Hindmarsh Hotel (‘The Gov’) 6.30 pm for a 7.00 pm start Featuring live music....and lots of prizes! $20 entry or $18 pp if you pay in advance. Tables of 8-10 Can’t make up a table? Call us and we will seat you with other music quiz enthusiasts. Please note food and drink must be purchased at the venue only This evening is proudly brought to you by The Bow Tie Bears Volunteer Events Committee 12 roundabout new staff René Stefanou Client Services Coordinator René is our new full time Client Services Coordinator. She has just recently completed her Bachelor of Social Work and has worked in the areas of Disability, Education and Advocacy around Welfare Rights. René feels strongly that everyone has the right to the best quality of life without discrimination or boundaries placed on them. René recognises that her predecessor Lisa Quinn must have been a Superwoman, but hopes that Amber Pyle (below) and her will be able to pull it all together! Amber Pyle Client Services Coordinator Amber is our new part time Client Services Coordinator. Last year she completed her Bachelor of Social Science (Human Services). Amber first decided to work in this area because she is interested in helping others overcome barriers and improve their quality of life. Amber has come from a background of working with Novita Children’s Services through her University. At MDA, she works alongside René Stefanou and helps to fill their predecessor Lisa Quinn’s shoes! Jodie Mastersson Volunteer Coordinator Jodie is our new Volunteer Coordinator. She has worked in the not-for-profit sector for the past 12 years. Jodie has worked within a disability organisation as their Communications Manager and in the last 5 years has been an Education Volunteer with the Arthritis Foundation. Jodie is also still very actively involved with the Arthritis Foundation on a volunteer basis; she therefore values and appreciates the work of every single volunteer as she understands them from a personal experience perspective. Jodie looks forward to catching up with all of the valued MDA volunteers soon! Sarah Rippin Marketing and Fundraising Coordinator g Sarah is our new Marketing and Fundraising Coordinator, working primarily in public relations, events and developing MDA publications. Sarah has a strong background of working with not for profit organisations, both within Australia and within South East Asia. Sarah has a double bachelors degree in marketing management and international studies, undertaken through UniSA and Thammasat University in Bangkok. Sarah is looking forward to the year ahead and says she already feels right at home at MDA! roundabout 13 mots Hi MOTS Fans, I do hope your year ended better than ours, no I did not have another fall that is all (nearly) behind me, this time it involved the start of our holiday in Mannum. The first 48 hours, disaster struck, John took ill and could not finish unloading our van on arrival, he had not had brekkie before we left, but after four hours on the bed he was okay, the managers of the park graciously unpacked the van, took keys out of ignition and assisted me in transferring, they gave more than required of their usual duties. John had packed our brand new bbq, but forgot the gas bottle, I lost a pin in my sunnies, had a doosy of an angina attack, John spilt hot wax from repellent candle on his good shorts, and the rear leg on toilet frame went down as I sat on it. So as you can imagine we were wondering if things could get any worse, well they didn’t until our return home. Sometime while away for four weeks, the fuses tripped in our home and we returned to a very smelly kitchen. My entire Crisco frozen food hamper completely gone. Seven drawers of meats, vegetables, desserts and prepared meals, enough for 5-6 months. But beyond all that, we did manage to have a very relaxed holiday, made all that more enjoyable because of the new electric bed, no more flying leaps to get on, no more precarious moves getting up and off, a big difference and I made certain a letter of thanks to all concerned on my, and other future users of the cabin’s behalf.. Our two grandsons were with us for six nights, they were so good, and a huge help to their nana and poppa, we only really knew they were here at meal times. My wish for the year 2010 is that all readers of Roundabout, members, volunteers and staff of MDA have a great year and a healthy one! Jenny positions vacant: volunteers MDA run a very busy schedule of events and we are currently recruiting volunteers to help us make our operations run as smooth as possible this year. > Event Assistants > Marketing Administration Assistants > Public Relations / Sales Assistants We have volunteer opportunities for assisting with administration in our office (primarily in marketing / fundraising) as well as PR / sales opportunities in helping to represent MDA through car lottery fundraisers in shopping centres. To express your interest in being a volunteer, please email Jodie Mastersson ( [email protected] ) and indicate your area of interest from the list above with a brief description of your strengths / skills. golf day 2010 ‘Put your muscles behind muscular dystrophy….’ JOIN US AND MAKE THE 2010 MDA GOLF CHALLENGE A GREAT SUCCESS! 2010 MDA Golf Challenge will be held at the picturesque Glenelg Golf Club on Friday 7 May. Mens, ladies and mixed teams all welcome to participate in the Ambrose Competition over the full 18 hole course. Includes breakfast, on course refreshments, morning tea and a 2 course presentation lunch. The MDA Golf Challenge is a fun day and provides a perfect opportunity to network, entertain clients and most importantly support children and adults who live every day with a neuromuscular disorder. To register or for more information, please contact Janice on 8234 5266 or email [email protected] 14 roundabout calendar of events 31st March Women In Dance (Belly Dancing) 29th April BTB Music Quiz Night 7th May Golf Day 1st-30th June PJ Party 26th June MDA Quiz Night 12th June Garage Sale 15th August Adelaide Marathon 19th September Tour Duchenne's 26th October World Of Trivia 2nd November Melbourne Cup December Twilight Walk . For further information regarding the above events or to confirm your attendance, please contact Sarah or Janice on 8234 5266 red bowtique Our Red Bowtique product range is classy, stylish, practical and forever growing! Take the stress (and parking troubles) out of your shopping by hosting a Red Bowtique party in your own home. All you need is a few friends, a pot of tea, some nibbles and one of our consultants will come to your home with our high quality range of gift and home wares. There are excellent hostess incentives, and you’ll be able to shop for your loved ones, all the while raising funds for MDA. We are also looking to recruit some more Red Bowtique consultants. The work is very flexible, pays well and comes with fantastic rewards! Please call the office on 8234 5266 or email [email protected] if you would like to have a party or would like to register your interest in becoming a consultant. some of our supporters roundabout 15 Dear Supporter, In January 2010 MDA ran its 10th annual kids’ camp, Camp Capacity, for young people with a neuromuscular disorder. Once again it was a great success and a fantastic opportunity for clients to experience a part of life they would usually miss out on, and for their families to have some well earned respite from the 24/7 care they provide to their kids with a disability. This year’s camp activities included a masquerade ball and a competition involving the transformation of wheelie bins into neat and very cool little cars! Every year we do our best to make the camps unique in their own way, with new and exciting programs and activities. This can be difficult without the provision of adequate funds. Through the help of you, and others like you, the Muscular Dystrophy Association has continued to provide valuable support to people with a neuromuscular disorder for more than 55 years. Despite only a very small amount of Government funding MDA has committed to raise the funds to keep providing a range of services, including: > camps > physiotherapy > counselling > equipment > speech therapy > support groups > hydrotherapy > respite > advocacy Thank you for the support you have given. Every donation we receive helps us to provide vital services that assist people with neuromuscular conditions to be as independent as possible. To continue to provide these services, however, we still need your help. Will you continue to assist us in providing essential services to our clients? Thanks for your support in the past and we hope you will be able to help us again. Kind regards, Paul Creedon CEO I want to support Muscular Dystrophy South Australia! Please accept my donation of: $50 Mr/Mrs/Miss/Ms: $30 $20 Name : Address: Phone: Other $ Postcode: Mobile: Fax: Enclosed is my cheque/money order OR please debit my: Visa Mastercard Other Credit Card No: Name on Card: Signature: Expiry Date: (or phone 8234 5266 for direct debit) I would like some information on giving a bequest The Muscular Dystrophy Association is a tax deductible gift recipient. Thank you, your donation no matter how large or small will help make a difference. Cheques should be made payable to Muscular Dystrophy Association Inc—a receipt will be sent to you. Please return to: Muscular Dystrophy Association Inc Reply Paid 414, Adelaide SA 5001 Phone: 08 8234 5266 Fax: 08 8234 5866