March 2017Download PDF version
In this issue :
European Association of Cochlear Implant Users
16, rue Emile Lavandier
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Greetings from the President
Photo: Teresa Amat (President, EURO-CIU), on the right, with Julie Ligeti (Cochlear) at the World Health Organization
In this new issue of our newsletter, we have some dates and milestones we want to highlight and congratulate on its development.
In first place, the “International Cochlear Implant Day” celebration which on this occasion has been joined by several of our own associations’ members, which has achieved a greater diffusion and impact.
In second place, we have made several steps to obtain scientific and medical society alliances, but also politicians inside the European Parliament about the importance of caring for hearing in all ages, highlighting prevention and early detection in adults. Alliances which we reaffirmed participating not only in the campaign of #Spend2Save but in various actions that were carried out in Brussels last month and in which members of our Board were present.
We also united our synergies with WHO (World Health Organization) with our presence during the World Hearing Day celebration in Geneva to continue working on the policies that are being developed in this regard in all areas, including working with the producers.
We cannot forget, as well one of our aims, breaking communication barriers, that is why, we keep working with EDF in this regard and we participated in their public demand of a strong Accessibility Act which we hope will break all barriers.
Finally, to end, we want to encourage you to accompany us next month in the incredible EURO-CIU Helsinki Symposium our Finish associations members (LapCI and CITO-Kuuloliitto) are working hard to succeed.
See each other really soon in Helsinki !
Teresa Amat (President)
Message from the Editor
Once again, thank you for your contributions – it’s good to hear from you all.
The last month has been very busy – with International Cochlear Implant Day on 25 February and World Hearing Day on 3 March. You will be able to read about these activities in this Newsletter.
The EURO-CIU Symposium and General Assembly are almost here, and I look forward to meeting some of you at these events, which are taking place in Helsinki this year.
With kind regards.
Brian Archbold (Editor)
EURO-CIU Symposium - Living with a Cochlear Implant
Living with a Cochlear Implant: EURO-CIU Symposium in Helsinki, Finland 20th-21st April 2017
The programme consists of expert lectures and workshops. International lecturers arrive from around Europe and Australia. All together over 40 presentations in three different rooms. See more info and the programme: www.euro-ciu2017.fi/en/
If you haven't registered yet, please register soon at: https://ilmo.contio.fi/ffconference/main.aspx?id=177 as a EURO-CIU GENERAL ASSEMBLY OFFICIAL REPRESENTATIVE.
Remember to book your accommodation too, more info here: www.euro-ciu2017.fi/en/accommodation/
See event in Facebook: www.facebook.com/events/538311149712439/
General Assembly on 22nd April
LapCI - Sisäkorvaistutelasten valtakunnallinen yhdistys ry
EURO-CIU at the European Parliament in Brussels – 1 March 2017
(Photo: Dr Leo De Raeve, Technical Advisor of EURO-CIU and CEO of ONICI; Mel Gregory, CEO of The Ear Foundation; and Henri-François Baiverlin, Treasurer of EURO-CIU)
On the 1st of March 2017, Euro-CIU, represented by Henri-François Baiverlin, Treasurer and Dr Leo De Raeve, Technical Advisor, was present at the European Parliament in Brussels for a debate
Hosted by MEPs Helga Stevens and Roberta Metsola.
MEP Helga STEVENS welcomed the guests
She wanted to stress the fact that young people are not aware of the risks by using headphones at loud volume.
Therefore, she pointed out the necessity of:
Shelly CHADHA, from the WHO
Said that unaddressed hearing loss costs annually $750 billion to the world.
Hearing loss should be addressed by:
It is time for action!
Mark LAUREYNS, European Association of Hearing Aids Professionals
There are 52 million people with self reported hearing loss in Europe.
Mel GREGORY, The Ear Foundation
She Insisted on the importance of screening and prevention.
Prevention is the key
Lidia BEST, European Federation of Hard of Hearing people
Joining forces will lead to better impact and results.
Laurence HARTMANN, Health economist
The cost of untreated hearing loss is in Europe is 178 billion Euro per year.
MEP Roberta Metsola, concluded and thanked the audience.
Europe should be a leader in taking action on hearing loss.
Treating hearing loss will make sure we can keep people in employment.
Let’s continue to work together:
World Hearing Day - 3 March 2017 at the World Health Organisation in Geneva
Photo: Dr Charlotte Chiong (left) and Prof David McDaid (centre); Dr Etienne Krug and Dr Shelly Chadha of WHO.
Action for Hearing Loss: Make a Sound Investment
The tenth World Hearing Day on 3 March was called “Action for hearing loss: make a sound investment” and the World Health Organization (WHO) hosted a meeting of European and Global organisations to highlight the Global Costs of Unaddressed Hearing Loss and the Cost-effectiveness of interventions.
Dr Etienne Krug, Director of the Department for Management of Noncommunicable Diseases, Disability, Violence and Injury Prevention (NVI) at WHO, introduced the meeting, welcoming all the speakers in particular. The event was recorded, and others were able to join by WebEx. He mentioned the exciting activities taking place globally for World Hearing Day – more than ever! Activities in so many countries including China, India, Kenya, South Africa, Zambia, Denmark, Spain and the UK –including press conferences in France and Italy.
Dr Krug mentioned the economic costs to society as well as the personal cost of hearing loss and the importance of raising global awareness of this major issue.
Dr Shelly Chadha of WHO shared with us her awareness of the issue of hearing loss being a growing public health concern, but that it was not highlighted by decision makers. We therefore need to put ourselves in the shoes of policy makers, asking what policy makers want to know when faced with policy decisions about hearing loss. For example: what is the cost of doing nothing? And is action cost effective? She was clear that interventions for hearing loss were cost effective: early identification was cost effective at whatever age, and that the provision of hearing aids and cochlear implants lead to a good return on investment.
She called on all stakeholders to create global action on hearing loss, raising awareness of a public health approach and for further education and research, finishing by quoting Gandhi:
“whatever we do may seem insignificant but it is important that we do it”.
Shelly was followed by Prof David McDaid, Professor of health economics from the London School of Economics, who answered her question about the cost of hearing loss to society - 750 billion dollars annually, globally. David commented that his figures are conservative and talked about
For children, the educational costs are between $24 and $45 billion per year for hearing losses over 50dB, with the burden in low and middle income countries, and the highest costs in China.
For adults, David explored the health care costs, productivity losses, and intangible costs. The intangible costs were estimated conservatively at $573 billion: with 52% outside high income countries. His final estimates arrived at the $750 billion annual global total costs of hearing loss which WHO are headlining , with 57% falling outside high income regions.
The cost effectiveness of newborn hearing screening was highlighted by Dr Charlotte Chiong, University of Philippines, a cochlear implant surgeon. In the Philippines, there has been shown to be $4.3million savings from newborn screening; initially in hospital-based services but now looking at affordable technologies and telehealth services to make newborn hearing screening effective outside the hospitals, where half the births take place.
Lastly, Eddie Mukaaya from Uganda spoke with his ten year old daughter, Elaine, who received her first cochlear implant at 4 and her second at 6. Their moving description of their frustrations on the journey to implantation for Elaine, and the clear benefits as she spoke with confidence to the delegates, brought home to all of us the reality of living with hearing loss as a family, and the amazing benefits cochlear implantation can bring. As Eddie said – “I waited five years for my first born to call me Daddy.”
Elaine is still the only child in Uganda with cochlear implants – how to move on with early intervention and rehabilitation to share the benefits with others remain key issues for Eddie.
“The importance of raising our children and giving a child access to sound – then there is no limit to their aspirations...”
At the end of the formal presentations, Qais Khan from the UK gave his personal experiences following cochlear implantation when he was a child.
The reports from WHO are available from www.who.int/pbd/deafness/world-hearing-day/2017/en and in several languages. Their call on Action for Hearing loss:
and they summarise:
Decision makers can address hearing loss by:
In Europe we already have the Spend2Save campaign by The Ear Foundation and EURO-CIU with the European summary available from http://eurociu.org/index.php/en/inicio-en/78-last-news/388-spend-2-save-campaing-investing-in-hearing-technologies-saves-society-money and http://www.earfoundation.org.uk/research/current-research/adult-strategy-reports (click on either the full report or the summary at Spend to Save). The summary is already translated into Dutch and into Spanish – and we look forward to more versions to share! At the meeting in Helsinki Brian Lamb will be talking about the European strategy and its goals and how action in your own country is possible – and needed!
A hugely encouraging meeting and day for all those of us interested in making cochlear implants more widely available to all who need them!
EDF - “We’re not asking for charity. We’re asking to be on an equal basis with others. It’s our right.” Disability movement demonstration in front of the European Parliament
Millions of people in Europe are still excluded from using basic products and services that are taken for granted for other people, because they are not accessible. The European Parliament is currently discussing the European Commission’s proposal for the European Accessibility Act which could make several products and services in the European Union accessible for all citizens including 80 million persons with disabilities and 190 million people aged 50 and older. The recently published draft report of the Committee on Internal Market and Consumer Protection (IMCO Committee), which is the responsible Committee for the European Accessibility Act in the European Parliament, was very worrying. The Committee’s report was dramatically watering down the proposal for the Act to such an extent that it would fail to bring a real positive change in the lives of EU citizens.
The IMCO Committee discussed the Act, among other topics, on 6 March in the European Parliament in Brussels. On the same day at 12.00, the disability movement made a demonstration in Brussels calling for a strong and ambitious European Accessibility Act. Greater accessibility has great added value, not only for people with disabilities but also for elderly people, pregnant women and for society as a whole.
Author of the criticised draft report and Danish MEP, Morten Løkkegaard, said: “being pragmatic and realistic, I am acutely aware that we will not achieve 100% accessibility overnight, but I am confident that, with this Act, we are heading in the right direction”.
According to EDF members, the Accessibility Act should do more to include the building environment to the proposal, and right now, even the European Council clarified it would be a voluntary accessibility requirement concerning the building environment.
Marie Denninghaus, EDF Transport and Mobility Officer further clarifies that the member states should not be worried on costs and implications, as no new obligations are created for 27 of the 28 member states:
"All member states except Ireland have signed the United Nations Convention on the Rights of Persons with Disabilities.
“More specifically, on any extra cost”, Denninghaus adds that any extra cost “is not a cost, it’s more of an investment. The money isn’t disappearing.”
All disability groups, EURO-CIU included, were calling on Parliament to broaden the scope of the proposal by including the building environment and key products and services, such as household appliances and hotels. The act should also have a strong relation with other EU legislation and not exclude micro, small and medium-sized enterprises (SMEs) from applying the requirements of document.
7th European Friendship Week 2017
The European Association of Cochlear Implant Users and The Ear Foundation, Nottingham are delighted to be running the 7th European Friendship Week
Who for: Cochlear Implant Users aged between 11 and 16
From: Sunday 23 July to Saturday 29 July 2017
At: St John’s School for the Deaf in Boston Spa, Yorkshire, UK
The European Friendship Week 2017
To have ‘Typically British Experiences’
Can your country arrange a delegation group? You need a leader who can speak English and an enthusiasm to come along and join in. The Ear Foundation arrange the whole event and support you through the bookings process.
We have received some great feedback from the young people from previous years:
“Seeing different people and their different cultures is good and made me happy”.
“It was more easy to understand English that I thought”
Our government awarded our residentials as OUTSTANDING in all areas in 2016.
AUSTRIA - CIA - Hearing for rent
Photo: Barbara Schwarz visiting Emil Hausmann and his mother Petra Hausmann (association “Eltern und Freunde Hörgeschädigter”) at the kindergarten Obergrafendorf , where she was informed about the use of FM systems. (© NÖ Landespressedienst/Filzwieser)
There is no nationwide financing of FM systems or other alternative listening devices in Austria. In 2016, Lower Austria was the second Austrian province to introduce a pool of devices available for pupils attending public mainstream schools and kindergartens.
”In the future, the acquisition of technical aids will be sponsored for children with sensory, mobility or communication-related problems”, promised Barbara Schwarz. Schwarz is the manager of the “Niederösterreichischen Schul- und Kindergartenfonds” (Lower Austria School and Kindergarten Foundation) as well as the council member of Lower Austria, responsible for education. FM systems support hearing-impaired children, so they fall into the category of technical aids mentioned by Schwarz.
For several years now, Lower Austria has been running a rental system for these types of devices for pupils of public schools. The schools can borrow devices from a pool designated for students. When the child leaves school, the devices are returned and then available for another child to use. Based on positive experiences with this program, it has now been extended to children who attend kindergarten.
A similar system is already well established in Upper Austria. There the devices are bought by the province, and schools, kindergartens and day-cares may rent them for a maximum amount of 15 percent of the actual price. As opposed to Lower Austria, in Upper Austria the pool is also available to students at private schools and higher education systems.
Due to the lack of nationwide financing for FM systems, special schools usually offer such devices for free to their pupils. Without access to any device pool, families with mainstreamed children have to procure these devices on their own and pay for them. Low-income families might sometimes find assistance at the ministry for social affairs. Device pools like this newly expanded one are a great help to the families of hearing-impaired children, and support integration.
AUSTRIA - CIA - Kids discover hearing and seeing
(Photo: ©Eva Kohl “A creative model of hearing”)
“Star Wars is a lie!” – that´s what the guide at Vienna´s Zoom Children´s Museum reveals. Kids can learn a lot of interesting stuff related to hearing in the interactive exhibition “Hör, hör! Schau, schau!” – a hot tip for your family’s stay in Vienna!
Why it´s unrealistic that somewhere in the universe you could hear a shout. Why dogs can move their ears and hear an ultrasound whistle while people can’t. How bone-conduction hearing works – even when the sound has to go all way up a person’s elbow and sleeve. – These are some of the questions that will be answered.
The interactive exhibition uses Montessori educational elements to help pupils develop their sensory perception and make them start to think about what they hear and see. Museum guides and signs are on hand to provide explanations, although most of the kids and accompanying adults prefer to set off on their own tour of discovery.
On the subject of hearing, you’ll find a creative model of how we hear and an area about sound perception and the context between hearing and emotions. Probably the most exciting display involves a chamber where a child is asked to shout as loud as possible, at which point he finds out if it was as loud as a lion or a car horn.
You can only visit the exhibition as part of a tour, and tours are available in German and English. Every tour starts with some basic information, and then the kids are free to explore the exhibition by themselves. At the end of the tour, everyone meets again for some feedback, and the “loudmouth of the day” is selected. The museum recommends registering for tours.
“Hör, hör! Schau, schau!” – a hands-on exhibition for children aged 6 - 12 years, is open till September 3rd, 2017 at Zoom-Kindermuseum in Vienna.
Detailed information at www.kindermuseum.at.
GERMANY - BayCIV - International Cochlear Implant Day
Hearing Training for Cochlear Implant users in Würzburg, Bavaria
We extended the International Cochlear Implant Day to three days, and offered special hearing training for CI-users in the lovely city of Würzburg, Bavaria.
During the introduction of the participants, many CI-users said that they suffered a long time after their hearing loss until they decided to take the step to a better hearing and understanding. “Don’t wait too long for getting CI’s” was the message they wanted to give to others.
At the end, the audience took a journey in listening over the months and the different seasons of the year. Margit Gamberoni designed this creative training and carried the audience through the year.
The next day started with meditation, for preparing the participants for the hearing training. Tina Borst and Anna Hoh, two audiologists from the CI-Center Würzburg, led the multimodal trainings where every participant stood in the middle of the course for gaining best results.
Afterwards, Dr. Anja Kurz informed everyone about news in Cochlear Implant techniques.
The day was closed with a short sightseeing tour through the ancient city of Würzburg.
On Sunday, Dr. Kirsten Rak from CHC Würzburg introduced the clinic, his tasks in research and daily work, and was ready to answer questions from the audience. Many questions were asked about getting a second CI.
Subsequently, Dr. Heike Kühn and Kelly Schepers presented the communication model of Schulz von Thun and demonstrated it impressively. Afterwards, the model was tested in a role play in small groups. “Yes, we should have more focus on good communication in everyday life”, the audience said.
Thanks to the organizing team Margit Gamberoni and Christl Vidal for a pleasant and smooth running course.
Translation: Reinhard Zille
GERMANY - BayCIV - 20th Anniversary of the Bavarian branch of the German Association of CI-users DCIG
(Picture - copyright Mr. Juergen Pichler)
BayCIV e.V., the Bavarian branch of the German Association of CI-users DCIG, is celebrating its 20 years anniversary on 24th June 2017 in Munich.
We have an interesting and entertaining programme planned. If you are around Munich that day, please feel free to visit us.
You’ll find all information about the event on our homepage:
THE NETHERLANDS - OPCI
(Photo: Living Room Meeting)
1. Cochlear Implant Day
On February 23th the CI centre of Utrecht University organised a meeting on behalf of Cochlear Implant Day. It was the fourth time they organized this special day.
There was an interesting programme with several speakers. The staff of the Utrecht implant centre told about the situation in the clinic and how the staff is composed. Also one of the researchers from University of Utrecht talked about the research they are doing in Utrecht: bi-lateral implantation for adults, CI for people who are single sided deaf and what does a CI sound like.
A researcher from NSDSK (the dutch organisation for deaf and hard hearing children) told something about the social emotional development of children with CI and the effect of reading out for deaf and hard hearing children.Also there were deaf sports enthusiasts who told something about sports and CI.
And, at the end, one of the audiologists from Utrecht talked about the methods of connectivity and CI
There were more than hundred CI users in Utrecht and of course OPCI was there with information of their work.
2. Living room meetings
Since March 2015 OPCI organises living room meetings for CI users and future CI users. There usually are 6 visitors, the host, a volunteer of OPCI and an interpreter. The meetings are very successful. During the past two years OPCI organised 30 meetings throughout the country.
There is no fixed programme. The people determine the questions and these are the subjects of the evening. Sometimes CI users tell each other about the possibilities of the CI and the connectivity and also they can tell potential CI users how it is to live with a CI.
The implantation centres in The Netherlands recommend to potential CI users: visit a living room meeting of OPCI. So they are really satisfied about the meetings. A visitor once said: tonight I have had more answers than I have had questions at the beginning of the night.
3. Waiting list in CI centres
In The Netherlands there is an increasing waiting list for the CI centre. The waiting list has arisen because there are more people who are familiar with CI by the information meetings of the CI producers and the OPCI living room meetings. Also the degree of hearing loss, which is used by the CI centres is changed: more people are qualified for CI. But the capacity of the CI centres has not become greater. The CI in The Netherlands is part of the health insurance. OPCI has written to all the Dutch health insurances companies to make them aware of the problem. The health insurance companies are not responsible for the number of implantations in the centres but they can use their influence to the Boards of the University Medical Centres to increase the number of implantations. OPCI will continue raising this problem until the waiting lists are gone.
In this case we also use the document of The Ear Foundation about “Spend to Save”
SPAIN - Federación AICE - Cochlear Implant Celebrations throughout Spain
(Photo: Some moments from the CI Day Events in Spain)
For the ninth year in a row, Federación AICE has celebrated the International Cochlear Implant Day with various events throughout Spain. Every act had one thing in common: the reading of the Manifesto called “Cochlear Implant Day”.
In Catalunya, on February 11th, more than 80 people attended to the talk with Hilda Furmanski, in Cotxeres de Sants in Barcelona. It was an interactive conversation with one of the main figures of Auditory Verbal Therapy in Spanish. For more than 3 hours, Furmanski answered questions and doubts expressed by parents and professionals. In Aragón, on February 18th, a group of Cochlear Implant Users and their families visited the Paraninfo (the Auditorium) of the University of Zaragoza. Afterwards, they went to share experiences and a good time in a brotherhood lunch.
The celebrations in Cantabria took place over two days. On March 3rd there was a lecture by Dr. Isabel de las Cuevas, who is neonatologist and paediatrician in Hospital Valdecilla in Santander, and one by Ana Ramasco, speech therapist in the same hospital. More 60 people listened carefully about the present and future of Cochlear Implant and its (re)habilitation. In the morning of the next day, on March 4th, a group of volunteers put a tent in a central square of Santander to make publically known the benefits of cochlear implants. Besides, there was a stage where a number of performances took place, including a live concert which it was live captioned.
In Castilla-La Mancha, on March 4th, the 3rd Charity Race took place for AICCLAM in Albacete. This year they were accompanied by people from Valencia, who went there to celebrate the Cochlear Implant Day, taking part in the race but also visiting the city and its Museum of Cutlery (Albacete’s knifes are very well know throughout Spain) as this museum is very good for accessibility.
Previously, in Valencia, a group of Cochlear Implant users picked up the Cochlear Implant “Ninot” from the Falla San Joaquín Costa-Burriana, which was created some years ago and was saved from being burnt, being donated to Federación AICE.
(Note: a “ninot” is a figure made of cardboard and this particular one is of a child with a cochlear implant. The whole assembly is called a “falla”, and the fallas are traditionally burnt on the final night of the Falles.)
SPAIN - Federación AICE - Cochlear Implant Day in Madrid, what a day!!
(Photo: The participants in front of the Spanish Parliament)
On February 25th, the main event of the Cochlear Implant Day celebrations in Spain took place.
In the morning, more than 120 people went to visit the Spanish Parliament in Madrid, divided in two groups, accompanied by Carles Campuzano, MP and President of the Integral Policies of Disability Commission. They all learnt a little bit more of how the Parliament works and were able to see where all the Spanish legislation is made.
And after a friendly companionable lunch, a group of 77 persons went to watch the play called ‘Taxi’ in Teatro La Latina. It was performance accessible to communication, since there were individual loops, amplified sound and captions. And we broke the record of attendance of deaf people at the same time at a play!! It was a comedy so everybody had a good laugh.
Federación AICE wants to thank all the workers, volunteers, assistants, entities, administrations and manufacturers for their work, contributions and support to this special day.
SPAIN - Federación AICE - Official Statement from the Spanish Senate for International Cochlear Implant Day
(Image: The Statement printed in the Official Journal of the Spanish Senate)
An Official Statement was read by the President of the Senate, Mr. Pío García-Escudero, during its Plenary on February 22nd, to celebrate International Cochlear Implant Day.
The statement says clearly that the Federación AICE has been launching Cochlear Implant Day for years, and the Senate shows its full support to any action of sensitivity in society, since they know how important it is that the politicians involve themselves to raise awareness of this disability.
SWEDEN - Barnplantorna launching unique website!
Since 1995 Barnplantorna has worked within the field of children with cochlear implants and their families. Like The Ear Foundation in UK, we started up courses early with the strong belief that we had to educate both parents as well as professionals to be able to change habilitation and school systems for the best of children with hearing impairment.
Barnplantorna has, since then, been in the front line for important developments in cooperation with professionals. We have had a great impact in changing criteria for cochlear implants in children – for example CI surgery in postlingual children to congenital children, lower age of CI surgery down to 5-6 months of age, implementing AVT (Auditory Verbal Therapy) in Sweden, bilateral CI in all children. Habilitation is still under development and in Barnplantorna we prefer to use the word family intervention.
During all these development processes Barnplantorna has through education put parents in the driver´s seat to demand changes. Much has happened since 1995. Today it is not enough with conferences and courses. We all have to ask ourselves: how do we reach the parents as well as professionals with evidence-based information when they all are out there in social media? We can question social media and the kind of information to be found there but we cannot stop it. We have to meet it and adapt our information to a changing reality not only within changes in CI but also the way people look for information.
Therefore, we have the last year been working very hard on a new website with basic up-to-date information about hearing and language, brain development, music within intervention, different kinds of hearing implants and hearing aids. What do you need to know as a new parent or a professional with only a little knowledge within this field? In Barnplantorna we aim to meet lack of knowledge or curiosity for more knowledge with the new website that also is linked to both Facebook and Twitter.
Have a look and be inspired!
TURKEY - Cochlear Implant Derneği (CID) - celebrates International Cochlear Implant Day
Turkey produced two posters to celebrate International Cochlear Implant Day.
UK - the CICS Group celebrations of International Cochlear Implant Day
(Photos - Tricia Kemp with Cllr Larraine Revah and her son Amir; cochlear implant cakes to mark the occasion; Rowan, Angela and ci-user Shea O'Donovan)
We decided that one of the best ways to celebrate this important date was to bring it to the attention of as many people as possible who might not know about cochlear implants. We asked our members to send us short statements about how cochlear implantation had changed their children's lives so that we could group these together to provide a continuous flow through Twitter and Facebook on 25th February.
Several families organised events in their children's schools. Parents went in to their children's schools to talk to whole classes about hearing impairment and to explain how cochlear implants can help deaf children and adults. Some, like Helen Selwood, organised a cake sale in aid of our charity.
By coincidence there was a Family Day taking place at the British Museum Festival of Maps on the same day. This is a very busy museum in central London and there was an opportunity for schools and charities working with deaf people to have a Stand at a special exhibition area to highlight their work. Tricia Kemp, Southern Region Coordinator of the CICS Group, took a Stand to showcase the charity and raise awareness of cochlear implants. As the theme of the day at the museum was maps, Tricia obtained permission from Transport for London to have a very large map made of the London underground. Cochlear kindly donated a Kaci Koala as a prize and we created a game for children. Kaci was having a day out in London and had stopped for a drink. Children had to guess which station he had stopped at. It was extremely popular with the children and provided a good opportunity for Tricia to talk to them and their parents about what a cochlear implant is.
Over 400 families came to the exhibition area, and Tricia was delighted that Cllr Larraine Revah of Gospel Oak, Cabinet Member for Equalities and Employment, visited the Stand with her son Amir. They chatted about cochlear implants and educational placements for deaf children in London and the Councillor posed for some photos.
Meanwhile Angela O'Donovan, Midlands Region Coordinator of the CICS Group was busy at a different venue in London - the Science Museum where Cochlear Europe had an event with recipients, young and old, celebrating the profound benefits that having an implant has brought them. Recipients were able to receive technical help, chat about the huge advances made over the years and make or renew acquaintances. A number of short presentations on hearing health and technology were well attended, followed by a Q & A session.
Numerous recipients were delighted to participate in Cochlear’s quest to find the Happiest Sound in the World by sharing their happiest sound on camera. The campaign to raise awareness about hearing health has been a huge success, with the sound of children laughing being declared the Happiest Sound in the world!
Kaci, the Cochlear Koala was also a great draw for the younger visitors, as were the fantastic face painters and balloon artists.
The CICS stand drew a lot of interest from families, many of whom were not members of the group but signed up on the spot.
After the event, families were able to tour the amazing displays in the Science Museum, including seeing the capsule used in the recent mission to the International Space Station by British Astronaut, Tom Peake.
We were delighted to take part in celebrations of International CI Day. We reflected on how fortunate we are to live at a time when technology can do so much for deaf people. Certainly all CICS Group members are very grateful to the implant manufacturers and professionals who work so hard to bring the best possible hearing to those who wish to have it. CI technology has already advanced so far, but we can't wait to see how much further it can go!
The Cochlear Implanted Children's Support Group (CICS) is a completely voluntary independent charity offering contact, information, support and events for families whose deaf children already have cochlear implants and for those considering implantation for their child.
UK - The Ear Foundation - Nottingham student at World Hearing Day at Geneva
(Photo: Qais Khan is second left on the photograph)
Qais Khan, Nottingham Trent student, bilateral CI user and longstanding friend of The Ear Foundation was invited to celebrate World Hearing Day at a seminar at the World Health Organisation in Geneva.
Qais was a guest of Cochlear along with Elaine Mukaaya and her Dad, Eddie from Uganda. Qais shared his experiences with the seminar delegates, speaking passionately about the opportunities that hearing has given him. He also compared his own experiences with those of his younger brother, who was implanted as a very young baby and has benefited greatly from early implantation. Qais stressed the importance of making hearing available to others around the world through better hearing care, early diagnosis of hearing loss and access to hearing technologies.
There was also some time for a bit of traditional Swiss entertainment!
UK – The Ear Foundation celebrates International Cochlear Implant Day
To celebrate International Cochlear Implant Day, the staff decided to get together for a group photograph.
GLOBAL NEWS - American Cochlear Implant Alliance Focusing on Research, Advocacy and Awareness
American Cochlear Implant (ACI) Alliance (www.acialliance.org) has started 2017 off with a bang. We are a not-for-profit membership organization created with the purpose of eliminating barriers to cochlear implantation by sponsoring research, driving heightened awareness and advocating for improved access to cochlear implants for patients of all ages across the US.
We introduced a new young adult blog in February written by Miranda Meyers, a college student with bilateral cochlear implants. Miranda offers an important perspective on life as a young adult cochlear implant user
The CI2017 Pediatric 15th Symposium on Cochlear Implants in Children
We expect many attendees from around the globe. There will be a number of panels on unique topics including one that will draw from technology companies in the San Francisco Bay area such as Google, Verily and Dolby Laboratories to learn from them
Outreach is being undertaken by American Cochlear Implant Alliance in partnership with the Hearing Loss Association of America to reach out to adults with hearing loss and others to improve information flow from trusted sources and increase the likelihood that adult candidates will explore cochlear implant intervention. Although cochlear implants have been shown to provide life-changing benefits and high rates of cost effectiveness, utilization rates in the United States are still stuck at 5% of adults who could benefit. This percentage is unchanged from the past 10 years. By working together we hope to expand awareness about cochlear implant candidacy and outcomes for
We are looking forward to 2017 as our organization continues to drive change by improving access to, and increasing awareness about cochlear implants.
Susan Thomas, MA CCCA
ADVANCED BIONICS - Tools for Schools and Tools for Toddlers
Get a Strong Start with Tools for Toddlers program
The Advanced Bionics Tools for Toddlers program (TFT) for early intervention and pre-school aged children provides free resources to help support and facilitate early language development. These downloadable tools can enhance a very young child’s journey to hearing:
Make it Simple with Tools for Schools
The TFS™ program for school aged children will ease your workload, save you time, and give you the assurance you need that a child's cochlear implant is functioning properly at school. It is designed to help children have a successful and rewarding educational experience.
In this program you will find key educational pieces that have been created to help parents and school professionals support children with hearing aids and/or cochlear implants in the classroom:
For new and updated materials, more information, and to download all these free tools, please visit www.advancedbionics.com/tfs
ADVANCED BIONICS - Disadvantaged children with profound hearing loss receive the gift of hearing in Panama
The Hear the World Foundation, a Sonova initiative, has for the first time supported an aid project with the donation of Advanced Bionics cochlear implants. Last February 2017, three children with profound hearing loss have received the gift of hearing and thus a fair chance of leading an independent life. This engagement built on the support the Hear the World Foundation has provided to the Panamanian non-profit organization Fundación Pro Integración since 2013 and marks another milestone in the Swiss foundation’s 10-years history.
First donations of cochlear implants for children with profound or total hearing loss
“The first cochlear implants donation is an important step for us,” says Lukas Braunschweiler, President of the Hear the World Foundation. “By leveraging another advanced technology from the Sonova product portfolio, we can now also give the gift of hearing to children with profound or total hearing loss.”
If left untreated, hearing loss can have serious consequences, particularly for children. Children who cannot hear, or can barely hear, do not learn to speak and, in many countries, are not able to attend school, which lowers their chances of pursuing a career and leading an independent life.
The gift of hearing where the state-run healthcare system can't help
Although Panama is ranked the second most competitive economy in Latin America according to the World Economic Forum, 26 percent of the population is living in poverty, and is lacking access to audiological care. While the health sector is making major progress in terms of its audiological care infrastructure, the state-run healthcare system can only cover the costs of audiological care for a handful of those living in poverty.
That is why, since 2013, the Hear the World Foundation supports the Fundación pro Integración (FUNPROI, www.funproi.org), one of the few institutions in the country which closes this gap by providing ear medical care to children living in poverty. By providing hearing aids, funding and expertise, hundreds of children have been helped. In addition, FUNPROI was honoured with the Richard Seewald Award in 2014, an annual recognition by the Hear the World Foundation to honour outstanding engagements.
COCHLEAR - The Nucleus® Kanso®Sound Processor – Benefits for children
The new Nucleus® Kanso® Sound Processor (CP950) is the smallest and lightest off-the-ear sound processor using the same industry-leading hearing technology as the Cochlear Nucleus® 6 Sound Processor (CP900 Series). As the launch continues around the globe there is more evidence that this device provides significant benefits for paediatric recipients.
Study demonstrates suitability
In a four-week, take home pilot study at Ghent University Hospital, Belgium, nine children assessed the suitability of Kanso. In objective tests in quiet and noise, users experienced equivalent speech recognition and listening performance with the off-the-ear (OTE) Nucleus Kanso Sound Processor, as compared with the behind-the-ear (BTE) Nucleus 6 Sound Processor. The children and their carers were also asked for a subjective evaluation of device retention, comfort and listening performance with the Kanso Sound Processor after four weeks of device use. In six of the nine cases, there was an overall preference expressed for Kanso Sound Processor over the Nucleus 6 Sound Processor, particularly the discreetness and cosmetic appearance of the OTE device.
Device retention was a prime consideration, especially with higher levels of concern related to processor loss with children. The Kanso Sound Processor is designed with a range of seven magnet strengths to deliver an optimal balance between retention force and comfort. A range of retention accessories is also available for extra security.
A significant benefit of the integrated and cable-free Kanso Sound Processor is easier daily device use and management. This allows children to be less reliant on adults to attach and activate their device, giving greater ownership and independence early in life.
The Kanso Sound Processor is compatible with the complete range of Cochlear™ True Wireless™ Devices, Aqua+ and remote controls. This allows children to stay connected in every situation.
The Kanso Sound Processor offers a simple, child-friendly interface.
Benefits for children
Objective and subjective data favour the comfort, look and ease of use in the Kanso Sound Processor, with no compromise on hearing performance. The Kanso Sound Processor offers children a comfortable, simple and discreet alternative to Nucleus 6, providing modern connectivity along with early independence and personal confidence in the daily management of their own hearing.
COCHLEAR - Cochlear advocates from Europe join forces with a family from Uganda at the WHO on World Hearing Day.
“My name is Elaine. I am ten years old. I bring you greetings from Uganda. I wear Cochlear implants. Without them I can’t hear you.
"I am in fourth grade. I like math, science and reading. When I grow up want to be a Robotic Engineer to help many deaf children learn to talk…”
Elaine Mukaaya, 3rd March 2017, Geneva.
Eddie Mukaaya described his heart ache as the parent of a deaf child in Uganda. The long road to diagnosis, cochlear implant surgery and intensive speech therapy in the US, served as a reminder of the importance of the WHO’s work and the value of efforts under the guidance of Dr Shelly Chadha, to prevent hearing loss and improve access globally to hearing care and hearing solutions.
Eddie Mukaaya said he and Elaine had travelled to Geneva for World Hearing Day “to make the voice of the voiceless be heard.”
The strong presence of leading CI advocates at WHO headquarters on World Hearing Day showed that the CI community certainly intend their voices to be heard!
Eddie and Elaine were particularly heartened by the presence of leading European CI advocates, including the President of EURO-CIU, Teresa Amat, President of CISIC France, Catherine Daoud and Vice-President, EFOHH, Lidia Smolarek-Best.
Elaine is also believed to be the first Ugandan child cochlear recipient. Once Elaine’s parents learned about cochlear implants and of the suitability of CI for Elaine, they found a pathway for their daughter outside Uganda. Elaine now has two implants and great results. Thanks are due to a compassionate ENT surgeon and an excellent team of audiologists from the US. In Uganda today, almost insurmountable challenges to accessing hearing technology persist. The work of the WHO to make hearing health a global priority means that this will change in the years ahead.
We are inspired by the way many cochlear recipients give their time and energy to engage in advocacy towards improved public policies so that others can have a better future.
Cochlear Ltd aims to transform the way the wider public understands and treats hearing loss. Our mission statement is to help people to hear and be heard.
That’s why we support the WHO’s efforts for World Hearing Day! The 2017 theme — “Action for hearing loss: make a sound investment” — draws attention to the economic impact of hearing loss globally and the actions which can be undertaken to address it.
Our media statement in support of the WHO's call to action is available here
MED-EL - Why MRI matters in cochlear implants
What is magnetic resonance imaging (MRI)?
MRI is fast becoming one of the most commonly used diagnostic and monitoring tools for many conditions. So much so, it is likely that most people will need at least one MRI scan at some point during their lifetime. (1) MRI machines are classified according to the strength of their magnets (measured in Tesla): the stronger the magnet, the higher the resolution of the scan and the stronger the magnetic force.
How do MRI scans affect medical devices?
Due to the powerful magnetic field, medical implants with metallic and magnetic components, such as cochlear implants, can create problems. Every cochlear implant has an internal magnet that can be affected by an MRI scan, and with the implant magnet in place, cochlear implant users risk magnet damage, device repositioning and pain and discomfort if an MRI is required. (2)
Historically, for implants with removable magnets, the only option was to have the magnet surgically removed before, and surgically replaced after, each scan. This required scheduling surgery on the same day, often in a surgery centre that was not at same location as the MRI centre.
However times have changed, and with continued advancement in the area of cochlear implantation and MRI safety we have started to see a shift in the landscape.
MED-EL’s SYNCHRONY ensures the highest degree of MRI safety and comfort of any cochlear implant
MED-EL’s SYNCHRONY, a ground-breaking cochlear implant launched in Europe in 2014, is evidence of this shift.
The SYNCHRONY cochlear implant ensures the highest degree of MRI safety and comfort of any cochlear implant. SYNCHRONY is the only cochlear implant approved for high-resolution 3.0 Tesla MRI scans with the implant magnet in place, meaning there is no need for surgery to remove and replace the magnet. (3)
There is also the benefit of no hearing down-time as the audio processor can be worn again immediately following the MRI scan. This is possible with the use of a special freely rotating and self-aligning diametric magnet, which is not affected by the MRI’s magnet field and prevents the implant from moving around or becoming demagnetised during MRI scans. Therefore the need for removing the magnet is limited to rare cases where the image blurring in the vicinity of the implant needs to be reduced.
To find out more about MED-EL and the SYNCHRONY cochlear implant please visit www.medel.com.
(1) OECD (2016), Magnetic resonance imaging (MRI) exams (indicator). doi: 10.1787/1d89353f-en. https://data.oecd.org/healthcare/magnetic-resonance-imaging-MRI-exams.htm. Last accessed March 2017.
MED-EL - Ideas for Ears: MED-EL launches children’s competition to discover the next generation of inventors of hearing technology
Global competition launched to raise awareness of hearing loss and the benefits of treatment
MED-EL has launched a worldwide search for inventions of the future through a global children’s competition, Ideas for Ears.
The competition invites children aged 6–11 years old from participating countries to create a piece of artwork showcasing their invention to improve the quality of life of people living with hearing loss. The competition celebrates children’s creativity and aims to improve understanding of the challenges associated with hearing loss and deafness as well as the benefits of treatment.
“From day one innovation has been and remains a key focus in our drive to overcome hearing loss as a barrier to communication,” said Geoffrey Ball, Chief Technical Officer at MED-EL and inventor of the SOUNDBRIDGE middle ear implant. “Born from inventors ourselves, the MED-EL story is proof of the power of a good idea and the impact that inventions can have on the lives of people living with a condition like hearing loss. The MED-EL Ideas for Ears competition will hopefully inspire young people and educate them about hearing loss communities around the world.”
The top inventions will be awarded the prize of a trip to MED-EL headquarters in Innsbruck, Austria. While there, they will tour the facilities and have the opportunity to meet with MED-EL’s many inventors. The overall ‘global’ winner will be announced on Inventors’ Day, 9 November 2017, at a ceremony at MED-EL’s Austrian headquarters.
The panel of MED-EL judges for Ideas for Ears, led by Geoffrey Ball, are looking for creative, one-of-a-kind inventions that could have the potential to help improve the lives of people with hearing loss at any age. Children might express their ideas through a painting, collage or video.
To learn more about the competition visit www.ideas4ears.com. The closing date for entries is midnight on Sunday 3 September 2017.
For more information on MED-EL, visit www.medel.com
MED-EL - World Hearing Day video highlights the importance of hearing in life’s great moments
MED-EL launches campaign to promote greater hearing health globally
To mark World Hearing Day 2017, MED-EL is launching a global campaign to raise awareness of the importance of hearing health and addressing potential issues early. A campaign film, Moment of Silence, has been launched to illustrate that while there are moments in life when hearing matters; there are some when hearing is everything, with once-in-a-lifetime sounds you would never want to miss.
This year’s theme for World Hearing Day is ‘Action for hearing loss: make a sound investment’, highlighting the impact of hearing loss on both individuals and society, while drawing attention to different interventions to address it.
Professor Ingeborg Hochmair, MED-EL CEO, comments, “Hearing empowers us and enriches our lives and we have come a long way in enabling more and more people to overcome hearing loss as a barrier to communication. More needs to be done however, particularly to improve global access to and awareness of the full range hearing solutions available to people living with hearing loss. Science and technology has been at the forefront of MED-EL’s commitment to people with hearing loss since day one, and we are committed to continuing to raise awareness of this growing issue and encourage people to protect their invaluable sense of hearing."
The World Health Organization estimate that the financial cost of hearing loss to be 750 billion international dollars (1) every year (2) , but the cost is also personal and contributes to an individual’s overall health. Untreated hearing loss affects communication and can lead to social isolation, anxiety, depression and cognitive decline. (3) One in five people with hearing loss would benefit from hearing solutions such as hearing aids or hearing implants. (3)
“We know precious moments can be missed for those people living with hearing loss,” said Professor Hochmair. “Regrettably, there is a great deal of misinformation and misperception about hearing loss. In addition, there is the fear of associated stigmatisation and often denial. Early identification followed by appropriate diagnosis and intervention and recognising the importance of an appropriate hearing solution can have profound benefits.”
Visit www.momentofsilence.co/uk to view the MED-EL video and learn more about the campaign.
(1) The World Bank. What is an “international dollar”? Available at: https://datahelpdesk.worldbank.org/knowledgebase/articles/114944-what-is-an-international-dollar Last accessed: February 2017.