Stay Tuned – October 2017

October 2017

Pia’s 30th Cochlear Implant Anniversary

Pia’s 30th Cochlear Implant Anniversary Welcome to Senior Research Engineer, WaiKong Lai

From the Medical Director A/Professor Catherine Birman, SCIC Cochlear Implant Program Medical Director

As the end of 2017 draws near, we reflect on all that has happened over the past 6 months at SCIC Cochlear Implant Program, a service of RIDBC

Welcome to the October edition of Stay tuned. We at SCIC Cochlear Implant Program have been very busy over the last few months supporting the individual journeys of our wonderful clients.

In this issue, we will hear about Pia, who celebrates 30 years since receiving her cochlear implant from Professor Bill Gibson. Pia talks about her life with a cochlear implant and her many achievements, including raising her family.

In July, we welcomed WaiKong Lai to our expanding team of professionals. WaiKong is a biomedical engineer with years of experience providing mapping, clinical support and extensive experience in research.

Colleen Psarros, Manager of Clinical Strategy and Professional Development, has provided a clinical update introducing our newly formed research team. Colleen emphasises the role the team has in ensuring that internal and external research initiatives are ethically undertaken and relevant for all of our stakeholders: hearing implant recipients, professionals and manufacturers.

Our Congratulations Corner is back and we have been inundated with the achievements and great stories of our clients. Twentyfour year old Lachlan Jackson was selected to play for the Australian Goannas Deaf Basketball Team and Liz Zappia appeared on the hit TV show ‘This Time Next Year’ with Karl Stefanovic. There is so much more to celebrate on page 7. If you’d like to submit something to share for a future issue of Stay Tuned, please get in touch with us (contact details at Congratulations Corner).

2017 marks the 50th anniversary of Pathfinders. Formed in 1967, Pathfinders is

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a voluntary committee of past and present Qantas employees formed to raise funds solely for RIDBC. One of Pathfinders’ annual fundraising events is the Qantas Pathfinders Charity Flight, a day trip to amazing destinations. This year in August, I had the pleasure of taking my daughter and our German exchange student to Uluru on the flight, along with 120 other people. Our thanks to all the wonderful volunteers from the pilots, cabin crew and ground staff, for a fantastic day and their wonderful dedication to the charity.

In this issue we also share information on how to access our device loaner and repair service and great tips on keeping children safe from button batteries.

We are always working to raise awareness of the extraordinary implantable hearing technology that can help so many people, yet only relatively few people who would benefit from these devices have received them. We are grateful for the hard work our dedicated and experienced team deliver, and yet with the increasing demand for our services and our desire to improve accessibility, our costs continue to increase.

We are reliant on donations and your support to ensure we meet these demands and continue to provide world class implantable hearing solutions for our present and future recipients. Donations can be made using the form on the back of this edition of Stay Tuned or by calling 1800 043 411, or online at scic.org.au/donate.

Thank you for your continued support and we hope you enjoy reading this issue of Stay Tuned.

With best wishes, A/Professor Catherine Birman SCIC Cochlear Implant Program Medical Director

Pia celebrates 30 years since receiving her cochlear implant 36 year old Naremburn recipient, Pia O’Donnell, is one of many adults being supported

by SCIC Cochlear Implant Program

Pia reflects on her life with a cochlear implant and how this has shaped her into the amazing woman she is today.

In 1987, Pia’s parents made the decision to pursue a cochlear implant for their six year old daughter. At this stage, the technology was new and the decision was somewhat controversial.

“In the 1980’s, there were very limited options for children with profound deafness. My parents pursued the cochlear implant so that I would have as much communication as possible in my future. My vocabulary was extremely limited before my switch on, however several months after the switch on, my vocabulary started to expand at a rapid pace,” said Pia. Pia was the first congenitally deaf child to be implanted by Professor Bill Gibson.

“During my switch on, my mum’s first words were, “Pia, I love you” and I understood her. She cried. My mum and dad watched me enter a world of new perspectives, how I was so enthralled and fascinated at the new sounds I could hear like ripping paper, sausages sizzling, birds singing – an endless magnitude of sounds.”

At this point in time, Pia’s life changed forever.

She has excelled since receiving her first cochlear implant 30 years ago and is now studying a double major in Climate Science and Spatial Information Science at Macquarie University.

“My degree will be completed at the end of this year, which I am very much looking forward to, after six years of study. I have achieved distinction marks for my degree, which is a great accomplishment that I am very proud of. Presentations at my university are a requirement of the units undertaken, so I had to learn to overcome my shyness and gain confidence in my speech ability in which I received high marks,” said Pia. Having experienced the benefits of a cochlear implant first hand, Pia didn’t hesitate to explore the possibility of a cochlear implant when her son, Casey, was also born congenitally deaf.

“My son, now 10 years old, was born with severe to profound congenital hearing loss. He has had bilateral cochlear implants since he was six months old, and attends a mainstream school.

Casey is thriving with his cochlear implants, and he is well respected and loved at his school.

Sometimes he forgets that he is deaf!”

Pia received her second cochlear implant in 2016 on the same date she received her first in 1987. Pia celebrates her life with cochlear implants and is thankful to Professor Bill Gibson and Associate Professor Catherine Birman for providing her with the ability to hear.

If you would like a copy of Professor Bill Gibson’s biography, visit professorbillgibson.com to purchase.

Pia pictured with her daughter Larissa (left) and son Casey (right)

For more information about cochlear implants or SCIC Cochlear Implant Program, visit scic.org.au 3

Services update

SCIC Cochlear Implant Program is continuing to lead the way in providing implantable hearing solutions to more and more Australians.

It is with great pleasure that I welcome WaiKong Lai to our organisation. WaiKong began his role as Senior Research Engineer in July and we look forward to benefitting from his expertise in the area of cochlear implant research.

In September, we re-opened the doors to our centre at the Australian Hearing Hub on the Macquarie University campus. The upgraded centre delivers a state of the art clinical experience for our clients, with two new sound booth rooms and the latest in audiometric equipment. We have also been able to design more functional rooms to cater for the increased demand we are experiencing for our services. We welcome all clients to the site and will be offering clients an opportunity to visit this fantastic location for upcoming appointments. There is easy access via public transport and free car parking available. I would like to take this opportunity to thank Sargents Charitable Foundation for their contribution in refitting this site.

As the year comes to a close, we celebrate the wonderful families we have supported. I am thankful for the team at SCIC Cochlear Implant Program for continuously striving to provide the best outcomes for our clients.

Bart Cavalletto Director, Services Royal Institute for Deaf and Blind Children (RIDBC)

Clinical update SCIC Cochlear Implant Program Research: A new team and a new comprehensive approach.

At SCIC Cochlear Implant Program, we continually strive to improve and expand on our evidence-based clinical services and better our understanding of innovative hearing technologies. The recently formed SCIC Cochlear Implant Program Research Team plays a pivotal role in ensuring internal and external research initiatives are ethically undertaken, and are relevant for all of our stakeholders: cochlear implant recipients, professionals and manufacturers. We are actively involved in a number of leading research projects both independently and in collaboration with local and international organisations and assist researchers with recruitment of participants for clinical studies which focus on bettering the experience of a cochlear implant recipient. Part of this process is to ensure our very generous recipients are not overloaded by the many research demands that present.

SCIC Cochlear Implant Program is continually looking for new opportunities to work with interested research partners to explore novel ways of improving the quality of life of those with hearing loss.

In recent months we have formulated a team of key researchers who have been pivotal in moving our initiatives forward: Philip Chu is a biomedical engineer research assistant who plays an active role in developing new protocols and tests to monitor the function of cochlear implants during and after surgery. Phil is tasked with regulating our databases and, most importantly, doing research that relates to important decisions about our clinical processes. He continues to work with our Senior Biomedical engineer Halit Sanli on developing and producing equipment for our intraoperative testing.

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Rachelle Hassarati is a biomedical engineer who has extensive research experience focusing on improving the way implantable electrodes interact with the body. Her role is to review, manage and conduct clinical research studies. This entails writing research project protocols and reports, assisting with recruitment for clinical studies, collection and analysis of data, as well as ensuring our studies meet compliance. Rachelle has been working on revolutionising the systems we use to ensure all research is clearly documented and projects run smoothly.

Rachelle is also actively involved in performing cortical evoked potential testing using remote technology.

Lynsey Gillies is a research audiologist working on HEARing CRC related projects. She has worked in a hearing aid clinic and has experience in environmental noise research projects. Lynsey also has an interest in sustainable hearing services in developing countries and has organised various fundraising events for ‘All Ears Cambodia’ and has spent some time volunteering in their clinics in Phnom Penh and Siem Reap.

SCIC Cochlear Implant Program has recently installed a new database system which will streamline data collection and ensure we capture important information for providing evidence based protocols. We will be checking with our recipients from time to time as to whether they wish to be involved in research projects.

If you would like to volunteer your time now or in the future or have any questions regarding our research, please contact us at research@scic.org.au.

We will highlight some of our new research initiatives in the next edition of Stay Tuned.

Colleen Psarros Manager of Clinical Strategy and Professional Development

Welcome to Senior Research Engineer, WaiKong Lai of Engineering Science and a PhD in Biomedical Engineering.

WaiKong’s extensive experience stems from his previous roles in research and engineering at the CSIRO department of Applied Physics, Monash University, University of Melbourne and Zurich University Hospital.

“I was involved in the development of the NRT Nucleus Response Telemetry system and software which is now used routinely on a clinical basis for cochlear implant fitting and management” he said.

“Some of my other work includes the research and development of novel bioinspired signal coding strategies, as well as the development and management of the Swiss Cochlear Implant database.”

WaiKong will work closely with the research team, maintaining particularly strong linkages to the Biomedical and research programs

On the 3rd of July, 2017, SCIC Cochlear Implant Program welcomed WaiKong Lai to the organisation’s expanding team of professionals.

Joining the organisation as a Senior Research Engineer, WaiKong has been involved in an array of deafness and cochlear implant research studies, holding a Bachelor degree in Engineering, a Masters

WaiKong has many years of experience providing routine clinical support for CI patients and such roles have equipped him with knowledge that SCIC Cochlear Implant Program will to draw from as we continue to revolutionise deafness research.

SCIC Cochlear Implant Program prides itself on innovative research and is one of the largest and most advanced services of its kind worldwide. WaiKong will be working closely with all staff providing services across the program, with particularly strong linkages to the Biomedical and research programs.

Client Profile Name: Herta Schlesinger Age: 89 Switch on date: 17/8/17 Describe your switch on in one word?

Fantastic!!

What has been the most rewarding part of your journey so far?

I have a lot more confidence and feel more motivated each day.

What is your favourite sound?

I love music.

What do you hope to be able to achieve with your new cochlear implant?

That I will keep hearing more and more beautiful sounds each day.

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Important device information From Lyn and Sue

Keeping children safe from button batteries • Keep coin sized button batteries and sound processors out of sight and out of reach of small children.

• Dispose of used button batteries immediately, flat batteries can still be dangerous.

• Examine the sound processor and make sure the battery compartment is secure.

For the Nucleus 6 processor ensure: 1. The battery module is locked to the processor unit. Carefully lift open the accessory socket with your battery cover locking tool and push the lock to the far left.

2. When using a standard tamper resistant battery cover make sure the battery cover is locked. Turn the locking screw clockwise with the battery cover locking tool until it is in a horizontal position.

• If you suspect a child has swallowed a button battery, immediately call the Poisons Information Centre on 13 11 26 or go to a hospital emergency room. Do not let the child eat or drink and do not induce vomiting.

Accessing the Loaner and Repair Service Please note you can access the loaner and repair service from your local SCIC Cochlear Implant Program centre.

All loaner processors are to be returned to SCIC Cochlear Implant Program immediately after you receive your repaired processor. SCIC Cochlear Implant Program has over 3,000 adults and children that need to use the loaner processors, and we need to maintain our loaner pool so we can keep all our clients hearing.

SCIC Cochlear Implant Program sells Cochlear Accessories Your local SCIC Cochlear Implant Program centre sells Cochlear accessories. You can buy Cochlear Microphone Protectors, the Aqua+, and Cochlear Wireless Devices such as the Mini Mic, Phone Clip and TV streamer. Please contact us to order these products. Call 1300 658 981.

Work experience at SCIC Cochlear Implant Program In August, SCIC Cochlear Implant Program had the pleasure of hosting Nese Sirikci for her year 10 work experience. Nese is a bilateral cochlear implant recipient, who in the future wants to work in engineering, to help create devices that will enhance hearing for hearing impaired people. It was such a bonus for all of us having her in the clinics, sharing sensitively with clients her experiences with cochlear implants. Nese has been part of the SCIC Cochlear Implant Program community since she received her first cochlear implant at age two. We wish Nese the best of luck for her future endeavours.

A/Professor Catherine Birman SCIC Cochlear Implant Program Medical Director 6

Congratulations Corner Liz Zappia Liz, mum of two cheeky children got a cochlear implant in March 2016 at the age of 37. She was lucky to be filmed for Channel 9’s TV show ‘This Time Next Year’ which showed her amazing journey from pre-implant to a year post implant. Her pledge was to be able to hear her children say ‘I love you’ for the first time and having a cochlear Implant achieved that. Liz loves her new ‘hearing’ and looks forward to what a second cochlear implant will bring her.

Ben Robins

Lachlan Jackson

In July, Ben Robins travelled to Samsun, Turkey as a development player for the Australian Men’s Deaf Basketball Team, the Goannas. Ben spent 7 months flying to Melbourne once a month for training with the team undertaking many hours of training in between. At 16, Ben was the youngest member of the team and found the experience amazing – both the basketball and the Deaf community. He is now in training for the U21 World Deaf Basketball Championships in Washington DC in July 2018.

Lachlan received his cochlear implant at age 23 whilst attending the University of Newcastle and continuing work.

Since receiving his cochlear implant, Lachlan has represented Australia on five tours for the Australian Deaf Basketball team. He is the only current deaf player in the Asia Pacific region to compete at a semiprofessional level, similar to the Championship Waratah League for Newcastle Hunters, a level below the National Basketball League.

Peter Vermeulen

Cara (Aly) Manasan

Peter achieved a personal best time in the 2km 12 years boys para-athlete event at the National Cross Country championships held in Hobart from the 11th – 14th of August.

Peter’s time was fast enough to win the gold medal! He also ran a personal best time in the 1.5km 12 years boys able bodied relay event with the ACT team.

Aly has come a very long way.

From someone who could barely stand in front of people in preschool to now, an almost 14 year old who competes in public speaking competitions, gives speeches in French, performs hip hop dances to represent her school and is at the top of her Math’s class. Nothing is impossible for this gifted young lady who had the will to break all barriers. Aly is now enjoying the fruits of her hard work.

Would you like to feature in the next edition of Stay Tuned?

Please send through your achievements, along with a photo of yourself to congrats@scic.org.au. We hope to hear from you!

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Your gift to SCIC Cochlear Implant Program is vital in order for us to continue to provide our crucial services.

Did » » » »

you know? In 2016: We supported 3088 implant recipients, and performed 391 new implant surgeries 169 surgeries were performed in public hospitals 63 of our recipients were children under 16 receiving their very first implant 220 of our recipients were adults receiving their very first implant

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