Au revior to one of SCIC Canberra’s families: Maddie Ferreira and her parents Kirsti and Morne who have moved to Nairobi, Kenya where Kirsti is to take up her role as the MSF (Doctors Without Borders) Medical Coordinator for Kenya.

Kirsti’s focus is the largest refugee camp in the world (Dadaab – home to 500,000 Somali refugees) where MSF provides many primary and secondary health services.

Maddie was one of the first babies to receive a cochlear implant through SCIC Canberra in 2010 and went on to get a bilateral implant in 2011. Since then she has been seen regularly by SCIC staff for mapping and habilitation.

With the family’s move to Kenya, Maddie’s parent were concerned that she would not be able to access regular mapping session and were delighted when SCIC was able to offer remote mapping to their home in Nairobi. Kylie Chisholm, SCIC habilitationist has been assisting Kirsti in learning how to manage the process at the recipients end while the ‘mapping’ is done from Canberra.

Canberra staff are sad knowing they will not be graced with Miss Maddie’s dynamic “physical” presence for the next couple of years, but are delighted that by using remote mapping software and equipment they will see her beautiful face via video link each 6 months.

Everyone at SCIC wished Maddies’ family a very happy and safe time in Kenya.

Taking SCIC to Africa

SCIC Newsletter: Gladesville, Newcastle, Canberra, Gosford, Lismore, Port Macquarie, Penrith November 2012

BREAKING NEWS

As the result of many generous donations, SCIC Penrith has been able to open for business fulfilling our determination to bring cochlear implant services closer to the residents of Greater Sydney.

In mid November staff member Andrea Gibbons welcomed the first clients Emmanuel Aiono and Cassie Masters at the Lethbridge Street centre. It is anticipated that the centre will quickly develop into one of SCIC’s busiest as recipients and their families become aware of this convenient addition to the SCIC range of services.

Newcastle 710 Hunter Street NEWCAStLE WESt NSW T 02 4926 8100Canberra 10 Rudd Street CANbERRA NSW T 02 6248 6492

Central Coast 46 A Mann Street GoSFoRD NSW T 02 4324 2110Lismore Suite 10A Conway Plaza, 21 Conway Street LISMoRE NSW T 02 6622 5593

Port Macquarie Shop 11, 146-150 Gordon Street PoRt MACquARIE NSW T 1300 658 981Penrith Suite 5A, 119-121 Lethbridge Street PENRItH NSW T 1300 658 981

SCIC Po box 188 GLADESVILLE NSW 1675bldg 39 old Gladesville Hospital via Punt Road GLADESVILLE

T 02 9844 6800 F 02 9844 6811 E scicadmin@scic.nsw.gov.au www.scic.org.au

Maddie meets the animals

Like us and become part of the online family while raising awareness for SCIC

Visit the new SCIC web site at www.scic.org.au

Share your cochlear implant story with us at www.scic.org.au/?page_id=126

Colleen Psarros and Yetta Abrahams

This is my story of finding my new ears.

I was only about 2 years when my parents discovered my hearing loss. Soon after I got a set of hearing aids and I started to learn sign language. that’s the way that people use their hands to say something to us.

Don’t be alarmed, because there are a lot of people who are deaf or have lost their hearing. As I grew older, it was getting harder to hear so I began to rely more on signs and lip-reading rather than my ears to understand.

When I was around 8 or so I stopped wearing my right hearing aid because I had lost hearing from that side completely. by the time I was about 11 my parents noticed that I had started losing my hearing on the left side too. this make it even harder to talk to or hear my family and friends and at school as they could not understand my words.

being so deaf I had never heard the birds singing, people talking on the other side of the room (that made it easy for my family to talk about my birthday presents in front of me!!) and I began to need support people to sign to me what was going.

I changed schools a lot and I’ve now been at Shearwater Steiner School for nearly 3 years - Did you know I’m the only deaf girl there?

Eventually when I was 12 I had an MRI to see if a cochlear implant might help me. I was a little scared about getting one because you have to have an operation.

but I said ‘yes I will’ and cheered up when mum mentioned something about games for my iPad as an incentive!!

Mum took me to SCIC at their Lismore office where I saw the audiologist who checked if I was suitable to get a cochlear implant. I was and in March this year Professor Gibson implanted a cochlear implant in my right ear at the hospital in Sydney. I spent about one and a half weeks recovering and the best bit was that I didn’t have to go to school!

the implant is under my skin behind my ear so I had a bandage around my head for the day that I was in hospital.

I got ‘switch on’ by Jacquie at SCIC Lismore soon after.

Since I had never heard sound in that side before, my brain had to wake up! It didn’t know what it was at first, it felt like someone was trying to get into my brain - shocks that feel like arrows or spears to me but I think it’s different for everyone.

After a few more weeks of testing with Jacquie I was getting really good at knowing the sounds! I’m used to it now and I celebrated my 13th birthday with my cochlear implant I was really surprised and very pleased when I first heard sound because it was the first time I’ve heard everything so clearly. Sometimes when it’s noisy, it hurts my ear, like when my class gets way too noisy!! Now we have an excuse to get my class to be quiet!

International Recognition for SCIC’s Paediatric ProgramSCIC was recently invited to share experiences with the CI community of Japan at a series of workshops and seminars held in Tokyo and Kyoto, including the 57th Audiological Congress.

Colleen Psarros, Clinical Research Manager from SCIC was joined by Yetta Abrahams from the Shepherd Centre in presenting on topics covering “the Changing Landscape of Paediatric Cochlear Implantation”, “bilateral Cochlear Implantation” and “the Family Centred approach in Cochlear Implantation”.

Issues in cochlear implantation in Japan and Australia are very similar and there were many opportunities for discussion and learning.

Currently 18 months is the youngest that children receive a cochlear implant in Japan so SCIC’s experience with earlier cochlear implantation was met with much interest.

until recently, bilateral cochlear implantation was rarely done in Japan, however it is expected that there will now be a trend toward both sequential and, where indicated, simultaneous bilateral cochlear implantation in the near future.

In a testament to SCIC protocols and development over the past 28 years, it was marvellous to see in what high regard SCIC is held by the vast majority of the Japanese clinicians who attended the seminars and workshops.

Since I had never heard sound in that side before, my brain had to wake up: Tallula Bourne’s story

Colleen visited the tokyo Medical Centre where a young girl had been assessed by SCIC, much to the appreciation of her mother

SCIC surgeons, Dr Peter Chapman and Assoc Prof Catherine Birman met with Professor Graeme Clark at the celebrations for the 30th Anniversary of the first commercial cochlear implant undertaken in 1982.

Soon after in 1984, Professor bill Gibson recognised the huge benefit the device would have for deaf people and started SCIC, now Australia’s largest cochlear implant program.

Sue Walters who had lost her hearing after contracting meningitis was Prof Gibson’s first recipient.

the success of the procedure was assured when Sue was able to use the phone soon after switch-on, something until then that would have been impossible for a deaf person.

SCIC has gone on to become one of the world’s most respected cochlear implant programs.

30 Years of Helping Deaf People

• SCICcompleted355cochlearimplantsurgeries across 13 hospitals and 9 surgeons

• 235peoplereceivedtheirfirstcochlear implant

• 120peoplereceivedabilateralimplant• SCICiscurrentlyprovidingservices

to 2543 active cochlear implant users with 514 having bilateral implants

• Clinicalstaffcompletedover9800appointments during the period

• RecipientsarelocatedthroughoutNSW from Lismore in the north to Wagga Wagga in southern

• Servicesareprovidedto30childrenand adults in the Northern territory

It’s no wonder our fabulous staff say they’re busy!!!

We are very excited to announce that our new Penrith Centre is now open. Sarah Love, one of our very experienced audiologists will be the Centre Manager with Andrea Gibbons providing the highest level of habilitation services.

our Port Macquarie centre is being relocated and will give recipients from the north coast a comfortable environment in which to see our resident habilitationist, Natalie opitz.

I’d like to acknowledge Maryann Mackenzie who recently retired from her administration support role at SCIC

Newcastle. During her time at Newcastle Maryanne and was selfless in her professional and personal support of SCIC – enjoy the quiet times Maryann and many thanks from your friends at SCIC.

After many months of discussions, the NSW Health Minister, Hon Jillian Skinner has announces generous cochlear implant funding for children at John Hunter Children’s Hospital Newcastle. this is a major development for recipients, being the first time that such funding has been made available outside a Australian capital city and means families can now access surgical services for their children without having the impost of regular trips to Sydney.

In addition to the anticipated increase in recipient numbers for Carmel Ramsey and her Newcastle team, we are currently seeking the services of a Family Counsellor that allow SCIC Newcastle to provide a complete range of services for children and their families.

of course, all this doesn’t happen without the ongoing financial support from our benefactors and the extended SCIC family. I thank you all for making these wonderful initiatives possible through your donation and encourage you to maintain your support for SCIC to enable it to continue to provide these world class services.

Managers Report

Your Radio Reading Service2RPH, 1224AM 100.5FM, 2RPH DigitalRadio 2RPH presents a variety of programmes that feature readings from the daily newspapers, periodicals and magazines.

A very useful service for those developing their speech using a cochlear implant

For further details visit www.2rph.org.au

Maddie is deaf, but that shouldn’t stop her reaching her potentialYour Bequest to SCIC gives children like Maddie a future. What a wonderful legacy to know that you have given deaf kids the chance to attend regular school, go on to gain meaningful employment and become contributing members of the community, just like yourself.

to obtain further information on how to leave a bequest to SCIC please contact the Development Manager: T (02) 9844 6800 F (02) 9844 6811 E scicadmin@scic.org.au www.scic.org.au

With the end of the financial year just completed it’s worthwhile reviewing some of our activities; it certainly provides an insight into the scope of SCIC and the services provided;

04 Jun 12 21:47 PM

I am raising money for SCIC (Sydney Cochlear Implant Centre). I had my first cochlear implant in November 2010 and my second one during February 2012.

In october 1966 when I was 21 months old I was diagnosed with meningococcal meningitis. During this time I was flown to Sydney from Dubbo and the doctors were afraid I would die or be deaf and blind. Although I recovered I was left completely deaf and was told at the age of 17 that hearing aids would not work for me.

It was many years later that an Australian Professor pioneered cochlear implants and significant developments have been made over the years. Now very young children are able to have the implant and can have a better life, which is why I would love to give more people the opportunity to have this operation. Although it was a hard decision to make after 44 years I am very pleased that I decided to have the operation. As I have had no hearing for 44 years I have undertaken speech and hearing therapy rehabilitation, which I am determined to continue.

I would be very grateful if you could sponsor me. thank you, Di

thanks for Supporting such a Great Cause!

09 Aug 12 11:14 AM

this morning I picked my GoLD CHARItY ENtRY bib from town Hall as it is getting closer to run my first city2surf race. this is very exciting for me as I have no idea how long it will take me to finish the race but I will be there to finish for my supporters who donated me.

I have been training well at the moment. before I had my cochlear implants, I would not run during the night because my balance was really bad but now it is perfect and I enjoy running at night time.

I am very thankful that my target has now been reached as all of the proceeds will be going to a worthy cause. If you haven’t donated but would still like to, it would be greatly appreciated if you could give any amount that is forwarded to the SCIC who have given me a new lease on life.

thank you for your continued support!

thanks for Supporting such a Great Cause!

13 Aug 12 10:34 AM

THE CITY TO SURF RACE

I finished my race in one hour 21 minutes 36 seconds. I thought I could do it and I did it. I am so excited. I was hoping to run under two hours. I want to do it again!

thank you all for believing I could do it. A great race even though it was so cold and windy. Also, I was so glad to run my very first city to surf to support SCIC charity at the same time. they have given me the gift of hearing as well as a new lease on life.

It is not too late if you haven’t donated but would still like to, it would be greatly appreciated if you could give any amount that is forwarded to the SCIC.

Thank you all for your generosity. It has been an exciting journey.

Congratulations and thanksRecipient Dianne Thomson and dad Alan Khaw for participating in the 2012 City2Surf.

TOGETHER THEY RAISED OVER $2,500.

Alan decided to do the city2surf for SCIC this year as a way of saying thanks to SCIC for all they have done to help his 4 year old son Cayden receive the Gift of Sound.

Dianne’s city2surf blog says it all

Staff at Di Lorenzo Tiles got together for what looked like a scrumptious lunch recently and raised $350 for SCIC.Many thanks to Maria Fresta, mother of six year old recipient Jack for organising the event. Events like this support SCIC as well spreading the word about how SCIC is able to help children like Jack benefit and get the very best outcomes from his cochlear implant.

Support SCIC by participating in the 2013 city2surf – entries open in late May 2013

While SCIC remains reliant on fundraising to bring cochlear implant services to the Hunter region, an injection of funding by the NSW Government will go a long way in enabling Public paediatric patients from the Hunter region access services through the John Hunter Children’s Hospital.

Robert McLeod, General Manager of SCIC joined the minister for the announcement. “this is wonderful news as travelling long distances is always an issue for families in regional areas” he said. the extra funding will help SCIC in the delivery of full cochlear implant services, avoiding delays in developmental potential.

You might be surprised to know that SCIC does not receive funding to maintain any of these crucial services.

• 7maincentres• RegularOutreachvisitstoregional

NSW and beyond• Theprovisionofloanerspeech

processors and all costs involved to mail or courier to a recipient

• Anafterhoursserviceforemergencymapping or other device issues

• StateoftheartITsupportincludingremote mapping and conference facilities

• Informationdaysforrecipientsandtheir families

• Professionaldevelopmentforthoseinvolved with cochlear implant service delivery

• Worldleadingresearchaimedatproviding recipients with the very outcomes possible

In fact they are funded entirely by people like you!

Your commitment to make a monthly donation (regardless of the amount) is a very cost effective way to help SCIC maintain these crucial services for cochlear implant recipients

To arrange to make your direct and effective personal contribution please fill in the monthly donation section on page 8 of this Newsletter and return to:

SCIC Development Office Reply Paid 85829, Gladesville 1675

First Paediatric Cochlear Funding for Hunter Region

NORTHERN TERRITORY:

SCIC in the Red Centre and the Top End

Your Regular Donation to SCIC saves on administration costs

A recent SCIC outreach to Darwin and Alice Springs coincided with the inaugural CICADA meeting in the Northern Territory.

A team of 4 SCIC staff members travelled to Darwin to provide support to existing CI recipients and potential candidates. Polly ballantyne, Kylie Chisholm, and Colleen Psarros were accompanied by Clinical Support officer Sue Walters who was able to provide on the spot troubleshooting and advice. Sue also spent some time working with local recipients on developing troubleshooting knowledge.

After a hectic few days in Darwin, Kylie and Colleen travelled to Alice Springs. In collaboration with the team at Alice Audiology, a remote mapping facility was established to service CI children in the Red Centre. Niro Dayalan the ItC Manager at SCIC worked very closely with byanka from Alice Audiology to establish this very important link. A big thank you to Rebecca and byanka for providing this essential resource to CI recipient in Alice Springs.

SCIC Newcastle audiologist Carmel Ramsay and GM Rob McLeod welcomed Hon Jillian Skinner’s funding announcement along with Liz and Sebastian Webster representing Hunter families who will benefit from a $500,000 boost in funding for paediatric cochlear implant services.

Sue Walters with an enthusiastic group of CI recipients at the inaugural Darwin CICADA bbq

of course Jesse took his implant off to go for a swim

Donna and Jesse orchard

A Strong SCIC Presence at 20th Audiology Australia Conference

Angus & StephanieAnne-Marie Crowe, SCIC Canberra audiologist, was delighted to be invited to the wedding of two of SCIC Canberra’s clients – Stephanie Tully and Angus Johnston in May.

Angus & Stephanie first met on a train bound for Deaf Camp in Sydney in 2003 and became good friends, corresponding for a couple of years before losing touch. Angus moved from bega to Canberra to complete his Carpentry apprenticeship in 2007 where he met up with Steph again. by 2008 romance blossomed and they became engaged in 2011.

Anne-Marie has been Steph’s Audiologist for most of her life - firstly at Australian Hearing and now at SCIC. Steph received her implant in late 2009 and was switched on in January 2010. She has since completed her bachelor of Education Degree in Primary Education and is teaching in Canberra. Angus was one of Prof Gibson’s first paediatric clients and received his first implant in 1989. He was reimplanted in 2010.

SCIC wishes them every happiness for their new life in Canberra.

SCIC Canberra, Newcastle , Gladesville and Western Sydney were well represented at the recent Audiology Australia conference held in Adelaide.

Staff from the centres presented a range of papers that covered recent research undertaken at SCIC including:

“Music perception in bilateral cochlear implantation – objective and subjective outcomes” presented by Polly ballantyne who has been successfully running music appreciation groups for CI recipients in the Hunter region.

Polly discussed how in a study with 14 adults with bilateral cochlear implants, bilateral CI did not contribute significantly to objective evaluation of music, however there was some evidence to suggest that bilateral cochlear implantation could provide subjective improvements in music appreciation with particular enhancement of “pleasantness, richness and naturalness” of music when using two cochlear implants rather than one. of course, music remains a challenge for

some CI recipients, however the work of Polly and Louise Skelt in Canberra, is showing that designated practise can assist in music appreciation over time.

“the non-users of cochlear implants – who are they and why?” was presented by SCIC adult specialist Carol Amos.

Carol found that 2.86% from 2750 recipients have stopped using their cochlear implants. the profile of the non-user which demonstrates the age they received the CI, the duration they used it and the duration they have Not used their CI can be found in Figure 1 below. the main reasons were due to development of dementia in 20%, with the next most significant factor being no perceived benefit from the CI. It was found that 66% of these people use signing as their primary mode of communication. Further investigations on this topic are continuing, with indications for research into assisting our dementia clients as well as a focus on expectations and counselling with certain cochlear implant candidates.

SCIC Port Macquarie on the MoveSCIC Port Macquarie will soon move to new premise further along Gordon Street.

the SCIC centre continues to support clients and families from the mid north coast of NSW. Many adult and child recipients are able to access some

remote mapping services at the Port Macquarie centre. Conducted once every month, these services provide an alternative for families wishing to reduce travel times and cut down on costs. therapy sessions for children continue to be utilized with SCIC Speech Pathologist Natalie Hunt.

Congratulations!

Anne-Maree Crowe at Angus Johnston & Stephanie tully’s wedding

Kirsten BrittenSCIC bilateral cochlear implant recipient and under 5 Girl Champion 2012 Walcha Pony Camp.

Anne-Marie Crowe with Polly ballantyne

Carol Amos and Colleen Psarros

Sharron Westcott SCIC Clinical Manager and Sarah Love

Important informationFrom the troubleshooting gals: Lyn & Sue

Award Winning SCIC Presentations in The NetherlandsCongratulations to Dr Kirsty Gardner-Berry for being awarded a prize for Best Paper at the 7th International Symposium on Objective Measures in Auditory Implants, Amsterdam in September.

Kirsty’s presentation “Electrocochleography responses in infants with auditory neuropathy spectrum disorder (ANSD)” was considered the best paper on the topic of auditory neuropathy spectrum disorder specifically, of which there were 10 presentations (oral and poster).

SCIC had three abstracts accepted into this category including Kirsty’s and those of Prof WPR Gibson and Jane brew.

the evaluation criteria included improvement in knowledge of ANSD, study design, and communication efficiency that were judges by an international panel included the researchers.

SCIC Gosford Goings OnSCIC’s audiologist at the Gosford centre, Samantha Barrett - has extensive experience with Adults and Children, having worked at Australian Hearing Gosford for 7 years before joining SCIC in August 2011.

Alison Gron has transferred to SCIC Newcastle and we wish her well and thank her for her service in Gosford. Jacqui treseder has replaced Alison and is a valuable addition to the Gosford team having extensive experience with hearing aids.

Andrea Gibbons - teacher of the Deaf has been part of the team for 2012 filling in for Sarah Wright who has been on leave.

Gosford hours are: Monday to Wednesday 9am to 5pm

Ph: 43242110

Replacement parts for your speech processor

If you are under 26 years of age or are Australian Hearing eligible and have either a Cochlear or Med-El implant

Please contact Australian Hearing Cochlear Implant Support Service on

Phone: 1800 131 339.

Fax: (02) 9419 8397

Email: cisupport@hearing.com.au

If you are not Australian Hearing eligible and have a:

Cochlear implant

Please contact Cochlear Pty Ltd on

Phone: 1800 620 929

Fax: (02) 9428 6352

Email: customerservice@cochlear.com.au

Shop on line: Shop at the Cochlear Australia Store at www.cochlear.com select Australia and then ‘Store, parts and accessories’.

Med-El implant

Please contact Med El

Phone: 08 9380 9775

Fax: 08 9380 9893

Email: Sonja.Stemler@medel.com

Please Note: For warranty purposes please keep ‘proof of purchase’.

Remember for troubleshooting advice or if you need a loaner speech processor please contact SCIC.

Tips for travellling with a cohclear implant

What should I take with me?

Ensure you have your Cochlear Implant Patient Identification Card for security purposes. If you do not have a Patient Identification Card please contact SCIC.

Remember to take a suitable AC adapter for your battery or remote assistant recharger. If you have a battery unit with disposable zinc air batteries it is a good idea to take that.

take some basic parts with you such as a spare coil, magnet and coil cable.

Can I leave my sound processor on when I walk through airport security?

When walking through the metal detectors at an airport, switch off your processor to avoid hearing an uncomfortable buzz. You can put your processor inside a carry-on bag and place the bag onto the conveyer belt at airport security.

You can leave your processor on, however, you may hear an uncomfortable buzzing sound which is just harmless electromagnetic inference.

Should I turn off my sound processor during take-off and landing?

You may be required to switch off your sound processor during take-off and landing so check with your cabin attendant. If you have a remote control for your processor, this should be switched off.

Remember • KeepSCICinformedofyourcontact

details to ensure you don’t miss out on important information or your expensive medical equipment does not go astray

• Alwayshaveacurrentreferraladdressed to Prof. W Gibson. Ask your GP for an indefinite referral if possible.

• Pleasegive24hrsnoticeifyouneedto cancel an appointment – please don’t waste clinician’s valuable time

• Makeyournextappointmentwellin advance. With a large client base it is difficult to get a time at short notice. SCIC will remind you of your appointment 1-2 days prior.

OPTION 1 Here is my/our MONTHLY gift of:

$15 $25 $50 $100

other $ (minimum $10)(An authorisation form for regular giving will be sent to you)

OPTION 2 Here is my/our SINGLE gift of:

$25 $50 $100 $250

other $

My/our payment details are:

Enclosed is a cheque/money order for $ made payable to SCIC

I /we wish to pay by Direct Debit

Account name:

BSB: Account No:

Please debit my/our Amex MasterCard Visa card,

Name on Card: Signature:

Number: / / / Expiry Date: /

CCV No: (last 3/4 digits of security number front or back of card)

Please send receipt to:

Mr Mrs Ms Miss Dr

Address:

Phone: Email:

Donations can be made online at www.scic.org.au

Return to: SCIC Fundraising Reply Paid 85829 Gladesville NSW 1675 P: 02 9844 6800 F: 02 9844 6811 E: scicadmin@scic.org.au www.scic.org.au

Please send more information about SCIC

I/we would prefer not to be acknowledged publicly for my/our support

Please send information on remembering SCIC in my/our Will

DEC 2012taxation 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.

Keeley White is just one of the many children able to access therapy sessions closer to home at SCIC Port Macquarie thanks to the continuing support of SCIC donors.

Donor funding covers the cost of sessions she attends along with her father, ben White and usually her Itinerant Support teacher John o’Shaughnessy.

Assoc Prof Catherine birman implanted Keeley at the end of March 2012 when she was six months old. She now uses a headband and pilot cap to keep her

implants on all the time. Since then she has progressed well and is now able to respond to all sounds around her, starting to say ‘mum mum mum’ and much to her dad’s delight ‘da da’.

big brother Kaal also has a cochlear implant and made the front page of the local paper when he was implanted in 2008. With two children needing support, the White family are certainly grateful for the donations cover the costs for SCIC to provideconvenient mapping and therapy services on the mid north coast.

Donations can be made online at www.scic.org.au

Donations help local families