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S C I C Newsletter: Gladesville, Newcastle, Canberra, Gosford February 2010 Welcome to the first edition of SCIC’s new look ‘Stay Tuned’ newsletter combining clinical and fundraising news from the centre. This publication brings you the latest news about the SCIC cochlear implant program, including important information on clinical developments, advances in technology and research, as well as stories from our recipients and updates on what is happening with fundraising for SCIC. Matthew Taylor and his mum, Kim came into town to thank Royce Everingham for instigating Wingham’s SCIC fundraising day. Fundraising continues to be a crucial part of SCIC. It is only through the success of the fundraising activities that SCIC is able to deliver the services recipient of cochlear implant need in order to obtain the best outcomes from their devices. Wingham – small town with a big heart Happy reading! In November 2009, the community of Wingham teamed together and held a fundraiser for SCIC. NEWS FLASH: You can see what a chewed processor looks like later on page 3 of this newsletter! The organisation of this event had started a few months prior when Matthew and I met a local Wingham business owner Royce Everingham. Royce was quite intrigued with my son, Matthew’s cochlear implant and the program at SCIC. Royce became even more so when he found out the cost of each device at $24,070 and amazed that SCIC, as a nonprofit, charity works so hard to ensure that recipients have all expenses fully covered. We have been particularly grateful to SCIC as over the course of the months since meeting Royce as our family dog had twice gotten hold of Matthew’s processor – the part of the cochlear implant that sits behind the ear - and chewed it into several different pieces. Hearing how SCIC always responded so quickly to repair or replace the damaged parts so that Matthew was never without communication, inspired Royce to start organising a fundraiser for SCIC. His aim was to raise money that would help with some of the costs involved in supporting recipients and I wanted to get involved as an opportunity to show my appreciation for the wonderful support SCIC has given our family. As Royce is the owner of two businesses in the small community of Wingham, he is quite a familiar face, so once people knew about how SCIC supports children like Matthew, there was a huge response from the community to help. Newcastle 710 Hunter St NEWCASTLE WEST T 02 4926 8100 Canberra 10 Rudd St CANBERRA T 02 6248 6492 Central Coast 46 A Mann Street, Gosford, NSW T 0427 404 127 SCIC Comes to Darwin The NT Minister for Health has announced SCIC as the provider of cochlear implants services to the Northern Territory. The twice yearly visits by SCIC staff will achieve a significant saving of time and money for NT residing recipients and their families. It will also mean that potential cochlear implant recipients will now be able to have the majority of their evaluation done locally through SCIC using services at the Royal Darwin Hospital and Australian Hearing centre. SCIC PO Box 188 GLADESVILLE NSW 1675 Bldg 39 Old Gladesville Hospital via Punt Road GLADESVILLE T 02 9844 6800 F 02 9844 6811 E [email protected] www.scic.org.au Continued from page 1 Three other Wingham locals: Max Hand, Ian Murray and Trevor Tisdell, were among those who worked hard to bring together a most successful fundraising event. Between them they were able to get the help of the local radio stations and printing specialist for advertising, music artists from as far as Tamworth, a jumping castle and pony rides for entertainment and items donated for raffle and auction held on the day. It was nice to see two other SCIC families whose children will receive cochlear implants in the coming month come along for the day as well. Royce’s initiative raised close to $4000 and has prompted other groups to undertake further fundraising events throughout the year for SCIC. These community event will contribute in a small way towards the service and technology provided from SCIC for our family and other recipients and I hope show how grateful we are for giving Matthew this special help! A cheque will be presented to SCIC at a function later in February. Kim Garousse Below: Wingham locals, Ian Murray and Trevor Tisdell pictured here with Matthew, used their considerable network to ensure that the SCIC fundraising day was a huge success. Prof Bill Gibson called into Nat’s on Old Bar while on holidays recently and caught up with cochlear implant recipient Nathan Quinell. Nothing is going to stop Nathan Nathan Quinell is now 23 years old. From an early age Nathan, with the help of his parents, has had to face and overcome some major health issues. As a 3 year old he was diagnosed with insulin dependent diabetes. A hearing loss was discovered when he was 8 years old and he was fitted with hearing aids. When he was 16 his vision also started to deteriorate – now he can only see large objects if they are within a couple of metres. As a result Nathan is relying more and more on his hearing to maintain his independence. However, by the time he was18, his hearing had deteriorated to the point where a cochlear implant needed to be considered. Nathan joined the SCIC program and received his first implant soon after. Three years later Prof Bill Gibson implanted his second ear as he believed this would give Nathan better hearing, including the ability to localise sound. Receiving cochlear implant services through SCIC has given Nathan the chance to fulfil his dream to become a chef. “None of these hurdles have stopped Nathan” his audiologist at SCIC Carmel Ramsay reported. “He completed his chef’s apprenticeship and in 2005 won the Youth Achievement Award through TAFE. Now he has opened his own restaurant Nate’s on Old Bar near Taree”, she added. Although his vision is limited, Nathan is able to work as a chef aided by some very precise organisation of the kitchen including everything he needs being in specific locations and close by. Congratulations Nathan on overcoming some difficult hurdles and best wishes for a very successful business venture. SCIC Professional development for teachers 2010 Each year SCIC offers professional development opportunities for Teachers of the Deaf to ensure that they are able to keep abreast of the many changes in the cochlear implant world. Teachers can choose from many different options that suit the needs of their team. Some teachers want to familiarise themselves with new technology, while others want to watch a mapping or habilitation session or learn about how we determine that a child or adolescent is a candidate. This year, SCIC has had a huge response with several teachers expressing thanks that our high quality training is offered free of charge, and that we are, in many cases, able to provide this training locally, as we already visit so many centres throughout NSW. If your child’s teacher has not worked with cochlear implants before you might like to let them know about this service. To find out more please contact: Andrea Gibbons on 02 9844 6812 or email: [email protected] Product Information The release of the Nucleus 5 system in November 2009 has raised a number of questions for existing cochlear implant users. This may help you understand what to expect with regard to accessing this new product. To assist you in navigating your way through the Nucleus 5 technology there is an excellent website that allows interactive troubleshooting. PLEASE USE THIS SITE IN THE FIRST INSTANCE to assist you if you are experiencing difficulties. Log onto: http://www.cochlear.com/au/ nucleus-support/troubleshooting The virtual remote assistant is a very valuable tool – for recipient and clinicians. A DVD will be made available shortly. FAQ: What implants can the CP810 speech processor be used with? Currently the Freedom and the CI512 (any implants from 2005 onwards) can use this speech processor technology. When will earlier implants be able to access the new speech processor? Cochlear Ltd is currently working on backwards compatibility of the CI24 and the CI22 series implants however there is no date set for this in the near future. We will keep you advised. Just a couple of tips from Lyn and Sue – SCIC’s Clinical Support Officers CP810 Please make sure you twist the connection between the batteries and the speech processor to disconnect. The magnet goes into the coil by screwing it downwards. SPECTRA and ESPrit users Please be reminded that these processors are now considered obsolete and will no longer be repaired by Cochlear Ltd. If you have not upgraded to an ESPrit 3G or more recent model, please phone SCIC to make an appointment to discuss upgrade with your audiologist. If you have a problem with your processor or equipment, PLEASE try to phone the centre early in the day, rather than later so that we have time to organise your equipment for courier pick-up. Our courier collects parcels at 3.30.pm, so early notice will ensure that you have next day delivery. If I am a Freedom user, how do I upgrade to the new technology? As of 26 Feb 2010 the CP810 will be listed on the Prostheses Schedule indicating that Health Funds recognize this product. Health fund support varies, so please contact your fund directly. SCIC can help you with a supporting letter to try and assist you with the upgrade process. For people who do not have private health cover, children under the age of 21 may be eligible for an upgrade through Australian Hearing, however this is yet to be finalised. Parents will be advised once details are known. I am using the CP810 and CR110 and have difficulty getting replacement parts. Australian Hearing is currently working towards developing an inventory of replacement parts. SCIC has some stock but may not have all components at this stage. CHEWED PROCESSORS Over Nov/Dec 2009, Australian Hearing replaced 7 processors that were chewed by dogs. Apparently the dogs enjoy the tasty human scent of a processor and this occurred mainly when a child went to a neighbour’s pool for a swim, taking off their processor and leaving it on a chair or table near the pool. If your child is going swimming at home or at a friend’s pool or ANYWHERE, PLEASE give them some sort of robust container to put their processor in and preferably, this should also be placed out of reach of the dog! Out and about fundraising for SCIC GO TEAM FARREL! Team Farrell Once again, Team Farrell fundraised for SCIC by participating in the 2009 Sun Herald City2surf. Team organiser, Neil Starrett from Narquay Marine and Diving, worked hard to rally as many people as possible, including Lane Cove Local Member Anthony Roberts. His encouragement to get involved and gather sponsorship for their participation resulted in a whopping $24,000 being raised for SCIC. This is a fantastic result that represents the purchase price of a cochlear implant. Thank you to the Farrell family, Neil Starrett and everyone who contributed to the success of the team effort. You have given another deaf person the chance to hear! Above: Team Farrell, led by cochlear implant recipients Thomas and Bradley, get ready for the start of the 2009 City2surf. Melinda Vernon, SCIC cochlear implant recipient and winner of the 2009 City2surf - woman’s division Want a simple, fun and easy way to fundraise for SCIC? Participating in an event, maybe Feb Fast, Dry July or even contemplating the City2surf in August? Maybe you want to hold your own event or make donations in lieu of gifts for a celebration like a birthday or anniversary? Whatever the occasion, you can be a hero for SCIC by building your own personal fundraising page at Everyday Hero and nominating SCIC as your preferred charity for donations. It only takes a few minutes to build. Then all you have to do is send an email to all of your contacts asking them to support you in your activity. You don’t have to worry about keeping records or collecting money as that’s all done for you. Log onto Everyday Hero at www.everydayhero.com.au and start fundraising for SCIC now! Belinda Di Lorenzo chose to support SCIC in Newcastle news: the Rebel Run4Fun held last November. “My nephew is deaf but doesn’t require a cochlear implant, he goes to playgroup with many kids that do though” she commented. “It’s really fantastic what you guys at SCIC can achieve with them, especially for young kids and I’m happy to try and raise as much money for you as I can.” Belinda took up the challenge to participate in the Rebel Run4Fun event and used the Everyday Hero website to create a webpage where she was able to outline to people what her personal challenge was in participating in the Rebel Run4Fun. She then used her email list to contact friends and ask them to sponsor her in the event. Through her friendship network and even some complete strangers who heard about what she was doing, she was able to raise $875. This will help some more little kids like the ones she knows from her nephew’s pre-school get good use out of their cochlear implant. Thanks for thinking of SCIC Belinda. On Tuesday, 23 March, from 10.00am to 2.00pm , there will be a Technology Day in conjunction with Better Hearing at their Club Room, 61 Christo Road, Waratah. Andrew Stewart, a technical expert from Printacall, will speak on the day about the latest developments in his area. He will be speaking at 11.00am and afterwards you will have the opportunity to try out their latest devices. Contact SCIC Newcastle 02 4926 8100 for further information. Above: Carmel Ramsay, SCIC Newcastle audiologist, set up for the 2009 Technology Day SCIC – well represented at the 7TH Asia Pacific Symposium On Cochlear Implants And Related Sciences SCIC clinicians were actively involved in the 2009 APSCI Conference held in Singapore last December. Overall 9 papers and posters reflecting the clinical and surgical work performed at SCIC were presented. Dr Catherine Birman presented a review of the paediatric cochlear implant population at SCIC. Professor Gibson discussed the use of electrophysiology at SCIC with special emphasis on how this related to the management of children with auditory neuropathy spectrum disorder. Professor Gibson also highlighted some of the surgical challenges when working with cochlear implant recipients who have cochlea abnormalities. Leanne Skinner and Sharan Westcott presented papers with a more clinical focus addressing issues including outcomes of particular groups such as pre-lingually deaf adults, language outcomes of children with auditory neuropathy spectrum disorder (ANSD), school aged children who receive a bilateral cochlear implant and recipients of the Hybrid-L device. Rob Harris, a surgical fellow of Professor Gibson, presented a paper on music perception of adult recipients with bilateral cochlear implants. Posters on the preservation of hearing and on vestibular function following cochlear implantation were also presented. The conference was previously hosted by SCIC in Sydney in 2007. These conferences are a significant date in the calendar of Cochlear Implants Clinics attracting delegates from all around the world presenting the latest findings in cochlear implantation. BAHA support at SCIC Audiologists Mandy Hill and Paula Berkley recently conducted a first for SCIC when they fit a patient with a BAHA (bone anchored hearing device). This device is used by people who have a significant conductive (middle ear) component to their hearing loss due to chronic ear infections, otosclerosis, cholesteatoma and microtia or atresia. They can also be used when people are deaf in one ear and have normal hearing in the other. The surgery for the bone anchored device requires fitting of a titanium component into the bone which osseointegrates – that is the bone grows around it. This component has a special connector to the sound processor as shown in the diagram below. SCIC audiologists with their extensive knowledge of working with implantable devices are well placed to support this group of recipients as required. NHSG fundaises for SCIC Newcastle At their annual Christmas party in December, the NHSG:Newcastle Support Group For the Hearing Impaired presented SCIC with a cheque for $5000. NHSG undertakes fundraising for specific items for the SCIC Newcastle centre and has now donated more than $20,000 over the years. We wish to thank Isabel and Max Lindsay and all their committee members for their hard work in raising this money. With this latest donation, SCIC Newcastle will be able to have some building work done to improve storage at the centre and to purchase a loop system and accessories that will provide better demonstration facilities for clients. Luke models one of the bonnet his mum has donated to SCIC Luke likes his bonnet Luke Palmer is now 18 months old. He received his first cochlear implant when he was 7 months old. Like most active toddlers, his mother Jenni had difficulty keeping his processor in place as he started crawling and later cruising around. She found that using a bonnet, similar to those worn by Surf Life Savers, was very helpful in keeping everything in place. Since receiving his cochlear implant, SCIC habilitationist Sarah Wright, in partnership with Jenni, is helping Luke make some lovely progress with his language development. He is now understanding lots of short phrases and single words and has become responsive to music, starting to dance when he hears it. In March, Dr Paul Walker will undertake bilateral surgery giving Luke an even better opportunity to develop his hearing. Jenni has donated several of these bonnets to SCIC. Speak to your habilitationist if you are interested in obtaining one for your child. Events for 2010 The SCIC Seminar Series 16 March: Hearing implant options and selection criteria This seminar will explore the selection criteria for various implant types including bone conduction, middle ear implants, electro-acoustic devices, and conventional cochlear implant arrays. Further the range of cochlear implant options and the attributes of each will be discussed Experts in these areas will join SCIC staff in highlighting the range of products available to recipients and the suitability of products for varying degrees of hearing loss. A reminder: Saturday 24 April Outreach dates 2010 Coffs Harbour 26-28th October The Libby Harricks Memorial Oration A keynote speech of the 6th National Deafness Sector Summit to be held at the Grace Hotel, York St, Sydney on Friday 23 and Saturday 24 April 2010. This year’s Orator is Professor Greg Leigh, Chair, RIDBC Renwick College, and Chair, Australasian Newborn Hearing Screening Committee. Greg is well known for his expertise in the area of newborn hearing screening and subsequent appropriate management, and his Oration (tentatively titled ‘Early Identification of Hearing Loss in Australia. Well begun is not all done’.) will address these and related issues. Time: 1.30-2.30 pm Darwin Dubbo CICADA The application of cortical evoked potentials in the fitting of hearing aids and cochlear implants will be presented. Results will demonstrate the way cortical evoked potentials may enable the optimisation of cochlear implant fitting and to assist in the prediction of outcomes following cochlear implantation. For function details contact Judy Cassell: [email protected] or Chris Boyce: [email protected] F/P 9997 3979 Focus on populations with cochlear implants: the elderly, ANSD, otoxicity and bilaterals This seminar will highlight the considerations when working with various populations considering cochlear implantation and the ongoing management of these clients. Clinicians and surgeons specialising in these areas will share the latest findings from their extensive clinical and research experience working with these populations 7 December: Where are they now? Our annual review of cochlear implant recipients sharing their experiences of the cochlear implant process and telling us where they are now. 10-12th May 8-10th November Griffith 20th and 21st April October (TBA) Lismore 14-16th April 6-7th July 24-26th November Nowra 11-12th August Orange 25th-27th May 2009 15-17th November Port Macquarie 17th – 19th February 30th June – 2nd July Cortical evoked potentials and their application in cochlear implants 14 September: 22-24th March 22-24th October 29 June: The electrophysiology team of SCIC will be joined by key researchers in this area for this presentation . 27-29th April On 14 Feb, CICADA held their first picnic for the year. A large group heard presentations given by Monica Bray, SCIC Senior Adult Audiologist, Donna Brown, the first bilateral HYBRID implantee and Simone Jeha Sen Project Manager, Cochlear Ltd. 15th-17th November Tamworth November TBA Taree 8- 10th March Every 2-3 weeks thereafter Tweed Heads 13th April 8th July 25th November Wagga Wagga CICADA Picnics: 11am to 3pm. SCIC Gladesville Courtyard 26-28th May 15-19th March 18-20th October Wollongong 10-11th March 6-7th October 11 Apr: Presentations by Nicole Lawder CEO and Alex Jones Chairperson of Deafness Forum. Dates for future picnics - details TBA: 13 Jun, 15 Aug, 4 Oct: AGM Morning Teas: 10.30 - 12.00 The Club Room @ SCIC 4 Mar, 1 Apl 6, May 3, Jun 1, Jul 5 Aug 2, Sep 7 Oct Committee Meetings: 69m The Club Room @ SCIC 31 Mar, 9 Jun 11, Aug 13, Oct 24 Nov njoy reading We hope you e roughout the ‘Stay Tuned’ th uld like to year. If you wo newsletters receive future ations from and communic l please let us SCIC via emai g know by emailin @scic.nsw.gov.au leonarda.pemberton AMA (NSW) Charitable Foundation funds new equipment In September 2009, the AMA (NSW) Charitable Foundation made a significant endowment to SCIC of $120,000. As part of their charter to fund projects where a real and immediate difference can be made to people in need, the Foundation agreed that part of this donation would be used to purchase a testing device, the Synergy Evoked Potential System. Sarah’s journey to hearing Sarah came to SCIC just before she turned 13. Her hearing had been deteriorating for some time and assessment indicated that she would benefit from a cochlear implant. Professor Bill Gibson fitted her with a cochlear implant at the Mater Hospital and since then, Sarah has been working with SCIC audiologist Jane Brew to optimise the benefit she receives from the implant. Sarah has now started Year 12 and has been elected a school prefect. She hopes to continue her education at University next year. I had to overcome my fear of operations and my audiologist Jane Brew assured me that everything would be all right. The day came for the operation. I was so scared and so nervous that I couldn’t stop shaking. I woke up feeling very sick and my head felt as if an anvil had been dropped on it. But I was relieved, the most agonising part of my journey was over. I’ve been on many journeys in my life so far, including primary school, a cultural experience in Europe or Thailand, another netball season or just getting through the day. Some are much harder than others but I’ve always taken away something good, even if it’s just simply that I was able to complete it. It took a week for me to recover from the soreness and swelling of the operation and I wasn’t allowed to go swimming or get my ear wet for a month. But two weeks after the operation, I finally got switched on. At first, there was incredible disappointment. All I could hear was beeping and buzzing noises, not normal sounds or voices at all. I was beginning to wonder at this stage of the journey if it was really worth it. Again I had to keep reminding myself it takes practise and patience. I’ve been lucky that I’ve led a normal life, even though I’m deaf and different to the average kid. Throughout primary school I wore hearing-aids, but I was treated no differently by the other students. My hearing started getting worse and I realised that one day my hearing may be completely gone. This was the beginning of my most crucial journey - to find my hearing again. For the last part of my journey I had to train my brain to hear all over again. By practising and doing certain exercises, I had to learn how to change the beeping sounds into regular voices. Amazingly, at the end of 3 weeks I was already doing this. My progress was extremely fast compared to other recipients so by the end of 6 weeks, I was finally finding my hearing. I was scared so my parents and I were trying to figure out what we could do. About six months into Year 7 we heard about SCIC and I thought this might be the end of my journey. I was accepted as a candidate for a cochlear implant, a device that would change my life. But I soon discovered it was only the beginning. Two years on, I look back and see how easy the journey might have been if I knew then what I know now. But that’s what journey’s are for; to discover, to learn and to push you to the limits emotionally, mentally and physically. If you keep pushing through and you keep looking forward, you will be rewarded with the Gift of Hearing. Sarah Power “The Synergy system is used before, during and after implant surgery,” said SCIC’s Founding Director, Professor Bill Gibson. “It helps to diagnose hearing loss, and during surgery, the electrical auditory brainstem response (EABR) is vital in ensuring that the device is correctly placed and is tailored to the individual recipient’s requirements. After surgery, the device can then be used to diagnose faults” he went on to say. As well as sponsoring the Synergy System, the remainder of the AMA Foundation’s donation will cover the cost of cochlear implant devices for three recipients who would otherwise be reliant on SCIC to raise the funds through charitable contributions. “We are delighted to provide this donation to help SCIC with its work. The value of the gift of hearing cannot be calculated,” Charitable Foundation Chairman Associate Professor John Gullotta said during the cheque presentation at the Foundation’s Annual Dinner at NSW Parliament House. Below: Kate Locke, cochlear implant recipient speaks with ABCTV Medical reporter and AMA (NSW) Foundation member, Sophie Scott Prof Bill Gibson accepts a cheque from Dr John Gullotta, Chairman of the AMA (NSW) Charitable Foundation Thank you The Donald Boden Memorial Trust – a long time friend of SCIC helps again to everyone who has contributed to the fundraising efforts of SCIC. Canberra news: During 2009 SCIC received close to $100,000 from The Donald Boden Memorial Trust. The following is just a few of the wonderful initiatives that have been shown; • David Crema for directing gifts to SCIC on the occasion of his 60th birthday • The Family of Bailey Foster for organising a fundraising event in Melbourne for SCIC that raised over $2,500 • Naomie Mascarenhas for fundraising for SCIC and getting her employer AMP to match it $ for $. The Trust has long supported SCIC with the specific objective of purchasing cochlear implant devices for children who may otherwise have not been able access this early intervention program. With each devise costing over $24,000, the funds received during 2009 from the Trust has meant that four more deaf children have been implanted and will have the potential to attend regular school by the time they are 5 years old. Anne-Marie Crowe and Janet Kenyon from SCIC Canberra accept a donation of $2,800 from Australian Ethical Investments Ltd. Australian Ethical donates 10% of its profit to useful charitable, benevolent and conservation projects. With early intervention being one of the key factors in the successful use of a cochlear implant, SCIC is extremely grateful that The Boden Trust has help by given over twenty deaf children the opportunity to communicate using speech, something that these children would have been previously denied. • The Cartwright, Simpson, Eveleigh, Stanley and Edmonds families for suggesting donations to SCIC in lieu of flowers at the funerals of their beloved family members. Donations can be made online at www.scic.org.au I would like to help SCIC with its mission to give deaf people the chance to hear Please accept my donation of $10,000 $25 I have enclosed a cheque/money order made payable to SCIC for Or, please debit my Amex/MasterCard/Visa card for Name on Card: Number: CCV No: / / $50 $100 $250 $ $ $ Signature: / Expiry Date: / (last 3 digits of security number front or back of card) Details for receipt: Mr/Mrs/Ms/Miss/Dr Address: Phone: Return to: Email: Fundraising Manager SCIC P O Box 188 GLADESVILLE NSW 1675 I would prefer that my donation to SCIC remains anonymous Please send me details on how to leave a Bequest to SCIC Donations to SCIC will be receipted through the University of Sydney Taxation Deductibility: All gifts over $2.00 are tax deductible under item 2.1.1 of the Table 30-25 of the Income Assessment Act 1997. FEB2010