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EURO-CIU Newsletter - September 2016

Written by EUROCIU on .

SEPTEMBER 2016

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EURO-CIU
European Association of Cochlear Implant Users
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Message from the Editor

We are hoping that you had an enjoyable Summer - and from this edition, you will see that there have been many events being held in different countries.  There are some important conference being held very shortly, and we hope to see you at some of them.

The next edition of our Newsletter will be going out just before Christmas, so please let me have your articles and photographs by Friday 9 December.  Please send them to This email address is being protected from spambots. You need JavaScript enabled to view it.

Brian Archbold (Editor)


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2nd International Music Festival for Children, Youths and Adults with Hearing Disorders “Beats of Cochlea” in Warsaw on 11-14 July 2016

The International Festival for Children, Youths and Adults with Hearing Disorders “Beats of Cochlea” is the cherished initiative of Prof. Henryk Skarżyński aimed at presenting the progress of hearing implant medicine and technology through the musical successes of implanted patients. This year it was also celebrating the 25th anniversary of the first cochlear implantation in Poland performed by Prof. Henryk Skarżyński and the 20th anniversary of the Institute of Physiology and Pathology of Hearing.

Ms Agata Kornhauser-Duda, the wife of the President of Poland, has honoured the 2nd Festival ‘Beats of Cochlea’ with her patronage emphasising the importance of increasing the public awareness of hearing problems and need for early intervention.

After a huge success of the first Festival, this year it has enjoyed even bigger popularity. More than 150 amateur and professional musicians with hearing implants have submitted their entries for the competition. The applications for the Festival arrived from the whole world: Canada, China, Colombia, Ecuador, Georgia, Germany, Hungary, Italy, Kazakhstan, the Netherlands, Poland, Russia, Slovakia, Spain, Turkey, Ukraine, and the USA. Based on the submitted demonstration pieces the Jury selected 32 participants, who were invited to Warsaw to present their musical talents before the jury composed of the prominent professional musicians, vocalists and representatives of the Polish media and culture, including Prof. Ryszard Zimak, the head of the Jury, rector of the Fryderyk Chopin University of Music in Warsaw, and Prof. Katarzyna Popowa-Zydroń, the chairman of the world-famous International Chopin Piano Competition.

The Jury selected 10 musicians who performed on 13th July in the Concert Hall of the Fryderyk Chopin University of Music during the Final Gala, which was hosted by Alicja Węgorzewska-Whiskerd, a world-famous Polish opera singer and Maciej Miecznikowski, singer and composer. The laureates had the accompaniment of the Polish Radio Symphony Orchestra under the direction of Prof. Krzesimir Dębski. The audience could relish the performances of musicians playing unique instruments such as guzheng and zither (China) or dombra (Kazakhstan), and the more popular piano, violin, flute or guitar as well as very good vocal performances. Several artists performed pieces they have composed especially for the Festival. Special guests of the festival were the artists familiar with hearing disorders like Barbara Kaczyńska, Jan Bukowski, Johanna Paetzold, Oliver Palmer or Grzegorz Płonka, and a rock band Mayor Tom from Spain, whose leader wrote a song for his little daughter who is a cochlear implant user.

The Festival is a celebration of success for many people: implant users, their families, teachers, therapists, doctors. The joy of this success was expressed in the Festival anthem titled “The world that I can hear” with the lyrics by Prof. Henryk Skarżyński and music by Prof. Krzesimir Dębski performed during the Gala Concert. It says: A sound can make a change. A sound that I can hear. A sound which stirred the absolute silence.


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2nd International Scientific Conference "Hearing Implants & Music"

(Photo: Prof. Henryk Skarżyński and our President, Teresa Amat)

Last July, our president was invited to the 2nd International Scientific Conference "Hearing Implants and Music" in Warsaw, Poland, where she talked about EURO-CIU's work and the different realities around Europe regarding the cochlear implant.

This scientific conference is organized jointly with the Beats of Cochlea Festival, whose base is music and the exchange of personal stories between so many countries is so important for us. EURO-CIU wanted to show its support in the continuation of this fantastical musical project and accompany all the cochlear implant users from several of our national associations who were present with their instruments and love for music.

Our president stressed the need to work together exchanging information between countries as well as to be more visible in the society eyes with conferences and events like this one. She encouraged the polish to join the international cochlear implant day and to participate in next year Symposium in Helsinki.


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Welcome to Finland, the land of water in its many forms! Pack your parkas and get ready for an Arctic Experience. Maybe a sauna and ice water swimming?... Or if you're lucky, you may still be able to see some snow!

Photo of Helsinki

(Photo of Helsinki)

Save the date from 20th to 22nd April 2017 for EURO-CIU Symposium & GA. It will take place in Helsinki, Finland. The event is organised by LapCI ry and CiTo/Kuuloliitto ry. The tentative venue is The Light House, a multipurpose centre owned by the Finnish Association of the Deaf, Finnish Federation of the Hard of Hearing and Service Foundation for the Deaf. There are different-level possibilities for accommodation in the very near proximity.

Our symposium topics include: Health Economics, Accessibility to Education and Life-Long Learning, Multilingualism, Peer Support and Rehabilitation, Design for All and Music and Cognitive Development. The symposium will be an interesting mix of scientific lectures and practical, down-to-earth workshops where you can learn by doing.

On behalf of the Organising Committee,

Ulla Konkarikoski          Pekka Lapinleimu
LapCI ry                        Kuuloliitto ry


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EURO-CIU presence in the 35th Otolaryngology Pan-American Congress in Cuba

Photos from the Cuba conference

Teresa Amat participated 13 - 16th June in the 35th Pan-American Congress on Otolaryngology in Cuba. Otorhinolaryngologists from all over the world, Belgium, Poland, Turkey, UK, USA, Argentina, Germany, Bosnia, Brazil, Colombia, Chile, Spain, Italy, Mexico, etc; attended this conference in the development of the specialty, presenting the newest advances and trying to broad all the knowledge in the matter.

On a parallel activity during these days, the rehabilitation centre "La Pradera" organized specially for the families and other fields related to their specialty, Teresa as speech therapist in her professional side as well as family of a cochlear implant user, gave her own presentation about rehabilitation, teens, accessibility, about how important is the family implication to help achieve success in rehabilitation and self-esteem of cochlear implant users. She presented as well EURO-CIU as a example of a multinational association of cochlear implant users which interested all present to try in the future create their own American multinational association.


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Adult Hearing Loss in Europe 2016 "Spend to Save" conference

Kartuizer Center in Brussels

(Photo: Kartuizer Center in Brussels)

The Ear Foundation is leading a Europe-wide effort to address what can be done to raise adult hearing loss up the public agenda.  The charity has produced a new European report of its findings in an effort to influencing health care decisions and access to today's hearing technology for adults.  The EURO-CIU Board will be at the conference at the Kartuizer Center in Brussels on 26 September where the report will be launched, and our President, Teresa Amat, is one of the speakers.  Delegates will be given the opportunity to help create a European wide strategy to address hearing loss in today's world.  “Spend to Save” will bring together the latest European research and practice in an accessible format.

Entitled “Spend to Save”, the report addresses the often underestimated, and therefore underfunded, impact of hearing loss in adulthood.  Chief Executive of The Ear Foundation, Dr Sue Archbold, explains: "We have exciting hearing technologies which can transform lives, but, in many countries, with increasing ageing populations and associated health costs, access to these hearing technologies may be denied, or the required long-term management not provided.

"We know that addressing hearing loss early leads to better health outcomes and believe that we have to spend on hearing care now, if we want to save money on health care in the future."

The conference is bringing together leading organisations EURO-CIU, EHIMA, AEA and EFHOH, together with users and professionals, to share the latest thinking in the management of adult hearing loss.  The aim of the conference is to raise awareness of the impact of adult hearing loss, the potential of today’s hearing technologies – and how we can move forward in ensuring those who need them can access them and use them to the full in daily life.  The latest figures and research will be presented, together with new health economics information and all set in the context of the experiences of adults with hearing loss.

Speakers include:

Teresa Amat, Helene Amieva, Sue Archbold, Lidia Best, Shelly Chadha, Ann Charlotte Gyllenram, Laurence Hartmann, Peter Helmhout, Soren Hougaard, Wendy Huinck, Brian Lamb, Mark Laureyns, Thomas Lenarz, Ciaran O’Neill, Leo De Raeve, Krishan Ramdoo, Jagjit Sethi, Chris Wood

Following the conference we are looking to continue sharing the up to date information across Europe, to ensure all hear the messages!

If you would like to come and join us, e-mail Sue Archbold This email address is being protected from spambots. You need JavaScript enabled to view it. .  Ten countries from across Europe have already registered for this conference – will you be there?


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European Friendship Week 2016

(Photos: (top) EFW group photo; (bottom) Clare Allen & Laia Zamora (Leaders) and Mel Gregory (new Chief Executive of The Ear Foundation from 1 November 2016)

(Photos: (top) EFW group photo; (bottom) Clare Allen & Laia Zamora (Leaders) and Mel Gregory (new Chief Executive of The Ear Foundation from 1 November 2016)

A collaboration between EURO-CIU and The Ear Foundation

An intercultural exchange between 39 young people from 7 countries.

The European Friendship Week (EFW) welcomed 39 deaf young people with cochlear implants, from Denmark, Germany, Finland, Hungary, Spain, Turkey and the UK.   Each group came with at least one leader who was responsible for bringing them to England, for ensuring their full participation in the week, and being part of the leadership team. The goal of the week is to enable deaf young people with cochlear implants develop independence, confidence in communication and experience of meeting others from other countries with a hearing loss and cochlear implants, and learning about customs in other countries. For those who are not from the UK it is an important opportunity to learn and practise English, the main language of business and communication today. For the UK group, there was opportunity to listen and practise other languages too and learn about other cultures. Most deaf young people with cochlear implants attend mainstream schools and have little opportunity to meet others with the same challenges as themselves. This was the sixth such week we have held and each year we are amazed by the changes we see in the young people in this short time.

EFW week, 2016

This year we changed the title to European Friendship week, rather than International Friendship week to reflect the reality and our collaboration with EURO-CIU.  The emphasis of the week was on mixing with others from other countries, inter cultural experiences, having a go, developing their self confidence and self esteem, feeling good about themselves while having lots of fun.   They have to develop independence in managing their own technology and any difficulties they may have – but in an environment where people are experts in both communication and technology and can support their development.

Throughout the week each country led a presentation to the whole group about their country.  During the week each young person stood at the front and spoke in English.  Some chose to read, some chose to use notes and others spoke spontaneously using their slides as guides.  Each person faced their individual challenges and did brilliantly well with confidence in this supportive environment.  We tasted an assortment of foods from different countries and we received a variety of gifts.  We even had a competition between the countries to say the longest word in Hungarian!  How amazing to watch young people with cochlear implants listening to completely unfamiliar sounds of a foreign language and being able to repeat them back.  For your interest the word was:

‘MEGKELKÁPOSZTÁSTALANÍTGATHATATLANSÁGOSKODÁSAITOKÉRT’

and yes it is one word!

Young People’s Feedback: what have you learnt?

  • That it is OK to be deaf. We can not change it
  • This week made me think that my deafness isn’t an obstacle a problem because of the cochlear implants. 
  • This week has made me understand I am not the only person who struggles to hear. 
  • There are a lot of students too shy to talk to each other but eventually when they are brave they are open to talk, play and have fun. 
  • My English is very good, but before come here I don’t know
  • It was more easy to understand English than I thought
  • “you don’t have to explain....”
  • “everyone has the same problem ....a hearing problem.... you are never alone”
  • “it makes you more open to learn about others and yourself.”

Summary

Our collaboration with EURO-CIU for EFW is one of the most valuable things we do during the year: these young people are going to be the deaf people of the future – where being deaf is different today.  This year we were delighted that our government inspection (which is really tough) awarded us OUTSTANDING for this week which is very exciting and important for us. Thanks to all who helped to make this possible – especially the leaders without whom it just wouldn’t be possible.

These young people have developed independence, self esteem and self confidence and independence in managing their own communication and technology needs. It is so encouraging to see some of the previous young people returning as leaders - “try it out – not always easy but you are learning a lot about others. I want to come back as a leader.”

We plan to go back to the young people and their parents – and find out if the changes we have observed have remained once back home.

“I’ve learnt that it’s ok to be different – here there are always people in the same situation.”


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Washington Declaration 2016 - New Hearing Technologies for Hard of Hearing People

Logo - International Federation of Hard of Hearing People

Persons who have a hearing loss constitute one of the largest categories of disability in the world.  Approximately 15% of the world’s adult population has some degree of hearing loss.  For many of them, hearing aids can dramatically improve their lives.

Hearing aids are very important to enhance accessibility and participation in society and their affordability is crucial as noted in the Essen declaration of April 2015.  Hearing aids and technology should be available and affordable.  No one should be denied hearing access because of price.

Hearing aids are essential to achieving the goals of the United Nations Convention on the Rights of Persons with Disabilities for many persons who are hard of hearing.  Under the CRPD, a person with a hearing loss has the right to a full and independent life (Article 5), to accessibility (Article 9) and to habilitation and rehabilitation (Article 25).  The UN CRPD has been approved and ratified by 160 member states.

Hearing aid technology is constantly improving, but brings with it challenges.  IFHOH encourages technological innovation and welcomes safe new developments that promote hearing accessibility.  These new developments should ensure for the compatibility of hearing aids with cellular phones and assistive listening devices.  IFHOH believes, that for the foreseeable future, the proven technology of the Telecoil must be included and activated in hearing aids and cochlear implant processors.  Cellular (mobile) phones and other sources of sound, should be compatible with the Telecoil.  New wireless technologies should work in parallel to the Telecoil.

IFHOH calls upon its members worldwide to work with governments and other bodies to provide hard of hearing persons access to hearing aids, assistive listening devices and new hearing technologies that are affordable, of proven quality, and professionally approved, with training and support to use them successfully.

Moved: IFHOH Board

http://www.ifhoh.org/

This amended motion was unanimously accepted by the delegates at the IFHOH Biennial General Meeting in Washington D.C., USA, on June 22, 2016.

(Note: Essen declaration: http://www.efhoh.org/#!news/c1j1n


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EDF meeting in Dublin

End of the May it was held EDF’s Annual General Assembly in Dublin, Ireland. It was opened with a European conference on legal capacity and the right of persons with disabilities to make their own choices in all areas of their lives.  More than 200 representatives from organisations of persons with disabilities across Europe, academics, self-advocates and other participants shared their experiences and discussed how persons with disabilities can be supported in making their own decisions.  One of the representatives was the EURO-CIU President Teresa Amat;  Vice President Sari Hirvonen-Skarbö as the observer and  Carmen Coleto as the assistant.

The conference was organised by EDF in partnership with the Disability Federation of Ireland and the Centre for Disability Law and Policy of the National University of Ireland in Galway.

Fiona Walsh from the Irish organisation ‘Recovery Experts by Experience’ talked about the organisation’s involvement in the reform of the law on legal capacity in Ireland. She stressed the importance of bringing the lived experiences of persons with psychosocial disabilities in the discussions of the reform.  For many people with intellectual or psychosocial disabilities,  basic decision-making rights are removed and their will and preferences are not respected. Many persons with disabilities end up living in institutions and psychiatric hospitals against their will.

EDF informed about the agreement which reached among the EU institutions (Parliament, Council and Commission) on the proposed Directive on web accessibility. Public websites and apps should no longer exclude anyone.

Unfortunately some exemptions will remain in the Directive, such as public broadcasters’ websites and live audiovisual streaming, and therefore EDF will need to continue working with its national members for a correct transposition at national level. Additionally, EDF will need to ensure that relevant and complementary EU legislation, such as the European Accessibility Act and the revision of the Audiovisual Media Service Directive will properly address what is not covered by the Web Accessibility Directive.

One of the issues was the paper of European Pillar of Social Rights.  The purpose of this paper is to explain the new policy initiative from the Commission- the European Pillar of Social Rights. The European Commission published a first outline of the Social Pillar and what areas of actions should include. There are three main headings:

At first the equal opportunities and access to the labour market , including skills development and life-long learning and active support for employment, to increase employment opportunities. The second of this is the fair working conditions. The third is the adequate and sustainable social protection, as well as access to high quality essential services and to enable individuals to participate fully in employment and more generally in society.

To mark the 10-year anniversary of this important regulation for passengers with disabilities, EDF together with the Disability Federation of Ireland and Dublin Airport organised an event on Friday at Dublin airport. It was celebration of the regulation on air passengers’ rights for persons with disabilities which was adopted ten years ago. This legislation has given clear guidance to airports on what services should be provided and how.

At the end of the General Assembly it was informed that EDF has a three year framework partnership agreement with the EU.  2017 is the final year of this agreement and it is also the 20th anniversary of EDF. This draft workplan is based on the framework agreement of EDF, and list activities EDF committed to do in 2017.   The  workplan has three different areas as:

First is improving the organisational capacity and the management of the network.  Secondly  contributing to the development of EU law/policies and to their implementation.  The last one is building the capacity of the members of the network.

These three are very first draft and EDF will inform later, which will take place in 2017.


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EURO-CIU presence in Accessibility Act EDF Task group force

As EURO-CIU Board has explained during the General Assembly in Varese, EURO-CIU wants to be present in EDF Task group forces. Sari Hirvonen-Skarbö, EURO-CIU Vice President has been nominated and accepted to be our representative in the Accessibility Act EDF Task group force.

After almost five years of campaigning EDF welcomes the proposal for a European Accessibility Act (EAA). It confirms the European Commission’s commitment to improve accessibility for persons with disabilities in the EU and it follows the recommendations made by the United Nations Committee on the Rights of Persons with Disabilities earlier this year. It is important to keep in mind that the main purpose of the proposed Accessibility Act is to align and harmonize the Member States’ legislation concerning accessibility.

We keep looking for volunteers, so if you are interested in participating in one of the EDF Email group forces: Building Environment, transport, information and communication technologies, non-discrimination, social services and community living and accessibility. Please contact This email address is being protected from spambots. You need JavaScript enabled to view it. with the subject: Volunteer. Please include a short explanation why you want to join. Thank you.


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Cochlear Implant Day 2017 - slogans

We are still looking for some more ideas for slogans for the next Cochlear Implant Day.  Please e-mail your ideas to This email address is being protected from spambots. You need JavaScript enabled to view it.


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FEAPDA Congress

Centre de Logopédie

As already announced, the forthcoming 24th FEAPDA Congress (Féderation Européenne des Associations de Professeurs de Déficients Auditifs) about « inclusion – and what it means for deaf education » will be held from 21st to 22nd October 2016 at the Centre de Logopédie in Strassen, Luxembourg.

We are pleased to inform you that the provisional programme is online now (www.feapdacongress2016.lu/prov-congress-programme.html)!  Please consider also the arrangements we concluded with two hotels in Luxembourg-City for your accommodation, which you will find under the following link : http://www.feapdacongress2016.lu/accommodation.html .  All information about the different arranged prices can be found on the two booking forms.

For further information, please visit the Congress website www.feapdacongress2016.lu or contact us at This email address is being protected from spambots. You need JavaScript enabled to view it. .  The website will be updated regularly, so that you will find all current information on it.

Please forward this information to colleagues or others who may be interested in the FEAPDA CONGRESS 2016 in Luxembourg.  Many thanks!


We are looking forward to welcoming you in Luxembourg!


Best wishes,

The FEAPDA CONGRESS 2016 organising committee


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SHIEC - Supporting Hearing in Elderly Citizens

SHIEC logo

There is a strong tendency in modern medicine to put patients more at the heart of the health care system. The European Patients Forum [1] states: “patients with chronic conditions are often referred to as the most under-used resource in the health system while patient-centered care models have demonstrated better quality of care as well as potential long-term cost-efficiencies. Too many patients are still struggling to get the support they need to become equal partners in care.”

To make this worthy vision a reality, it is important to provide the patient with handles to gain control over their own lives and to increase their capacity to act on issues that they themselves define as important. It implies that processes and tools must be in place to increase their self-efficacy, their self-awareness, their confidence, their coping skills and health literacy.

These success factors for patient empowerment also apply to users of a cochlear implant (CI). Part of the therapy when people receive their CI is for audiologists to provide substantial counseling on the use of the device and its features, and provide lifestyle coaching (communication tips and tricks). Usage of the device can nowadays be measured by means of data logging. Hours of usage can e.g. be used as an intuitive metric for hearing health and applications can be built to support the user in their hearing habits.

In the future, care delivery should therefore be much more centered on the patient, and involving other actors, closer to the home environment of the CI user. For such a model to be successful, it is important that common digital platforms exist, where each of the parties has access to the relevant information.

In the SHiEC (Supported Hearing in Elderly Citizens) project we concentrate on tools in order to better support senior CI users. The first year after implantation is an intense year with multiple visits to the clinic to fit the implant, intense auditory rehabilitation and a lot of knowledge and skills that need to be acquired.

This is achieved by (1) empowering people and (2) bringing them remotely in contact with their specialized hearing centre

  1. Empowering.  People are empowered by giving them information about their CI. SHIEC’s digital health platform allows them to solve small CI issues themselves, without the need of a specialized CI center. For example, they can find subtitled instruction videos about changing a battery. Also personal information about their own sound processor is given. Furthermore, the platform provides self-tests enabling elderly people to evaluate their own hearing.
  2. Remotely in contact.  The SHiEC project will also bring up a prototype of a portal linking the clinician and the CI user. The goal is to provide a platform for a clinician to remotely monitor the performance of a CI user in their home environment.

For more information about this project, please visit www.shiec.eu

Acknowledgements

The SHIEC project is funded by the Active and Assisted Living Program (Project Number 2013-6-065) [2]

References

[1] European Patient Forum, http://www.eu-patient.eu/campaign/PatientsprescribE/
[2] AAL JP, http://www.aal-europe.eu/


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AUSTRIA - CIA Summer Days 2016

Group at Velden

At the 13th Summer Days in Velden many new young families attended and enjoyed the holiday idyll on Carinthia Wörthersee.

This year the new playground on the large lawn of the area was a great adventure especially for the many new families who participated with their young children between 0 and 5 years. They showed us, that the interest for these summer days is still as much as at the beginning in 2004.

So the creative and theater workshop team offered the kids plenty of opportunities and made many new experiences with these young children who participated the first time.

Traditional sport activities were indeed like every year: Banana and tire ride, beach volleyball, football, running and cycling which were accepted from the big to the small participants with much enthusiasm and energy. Much appreciated was fitness trainer Karin Fitz who offered a colorful training program several times a day.

In the evening we either sat on the terrace together, visited a very child friendly restaurant at the nearby Pyramidenkogel or made at great cocktail party on the last evening.

So the 13th Summer Days were also a great success and the planning for the coming year has already begun.


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AUSTRIA - “Ubuntu” – Mutual Respect

M. Wollrab, H. Horak, I. Hinteregger, I. Frühwald, M. Felbauer

(Photo: (©Fuchs)  At FCEI, people with hearing loss are on equal terms with professionals: Members of Cochlear Implant Austria with speech therapists from St Pölten University Clinic. From left to right: M. Wollrab, H. Horak, I. Hinteregger, I. Frühwald, M. Felbauer)

“We all have a dream for our children, no matter which language they speak, where they come from, which culture they have or whether they have any other disability”, FCEI Chair Christine Yoshinaga-Itano  pointed out. The third Family centered early intervention (FCEI) Congress, held 15-17 June 2016 in the Austrian town of Bad Ischl, brought those together who know how to support families in reaching this dream. Cochlear Implant Austria (CIA) participated as Austria’s representative.

CIA Team

Young children can best be supported and encouraged by their family. Family-centered early intervention considers the whole family of handicapped children. Congress president Priv.-Doz. Dr. Daniel Holzinger explained how much the Early Intervention Team in Linz (Austria) had benefitted from the experiences of teams in other countries on its way from a child-focused approach to a family-centered one. Therefore, the ‘Institute for Sense and Speech Neurology’ wanted to provide an opportunity for exchange.

“The families are so grateful”, congress organizer Priv.-Doz. Dr. Johannes Fellinger, head of the Institute for Neurology of Senses and Language at Linz, Upper Austria summed up all the positive feedback. More than 400 participants from 38 countries and any continent travelled to Bad Ischl: from Romania, Uganda and the Iran, from America and Australia, to mention just a few. The congress provided participants ideas and opportunities for networking. “A lot is happening”, the Director of the ‘Institute for Sense and Speech Neurology’ in Linz stated. The next FCEI Congress is scheduled for 2017 in Johannesburg (South Africa) as an ‘Indaba’, an important conference, held in mutual respect - in ‘Ubuntu’.

“With“ rather than “for“ people affected

‘Unusual’ best describes the first impression in the “Theatre Hall”, the largest of five lecture rooms: On stage, four interpreters next to the presenter signed in German, American, British and International sign language. Speech to text screens were provided as well as an induction loop in the hall. The hearing-impaired audience used induction receivers, while participants with normal hearing listened to the simultaneous interpreters. Sign language interpreters in the audience translated less common sign languages for a small number of participants.

People at FCEI came from various backgrounds – users of sign language, implant users, normal hearing people, people with hearing loss, their families, and experts. The lecture topics covered a wide bandwidth. Every opinion counted, no matter whether it came from an expert, a person with hearing loss or a parent.

Various Kinds of Communication

A number of presentations encouraged the use of different communication modes, focusing on the importance of building communication. “You have to learn your first language early”, British scientist Prof Bencie Woll explained, and described how normal hearing individuals also acquire multimodal speech by lip-reading in everyday life. Kathleen Vercruysse demanded that all family members learn to sign when a child is raised with sign language. Linguist Diana Lillo-Martin objected that “it is too much to ask from parents to learn signing just to be the bridge between their deaf child and social communication.”

Eva Karltorp MD is the medical doctor in charge of the CI team at Karolinska University Hospital in Stockholm, Sweden. She presented exciting results of the Swedish cochlear implantation model in children. She summarized: "Today, the families of children born deaf know some sign language. But most children are bilaterally implanted and audio verbal educated."

Information on Family Centered Early Intervention FCEI:

Further information and discussion: www.fcei.at.

The first FCEI Congress took place in 2002 and has since been held biennially in Bad Ischl, Austria.

FCEI Africa with focus on developing countries: 28 – 30 June 2017, Johannesburg, South Africa

FCEI International: 13 – 16 June 2018, Bad Ischl, Austria


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AUSTRIA - Meeting – CIA-General Assembly 2016

More than 60 participants at the general assembly of CIA

(Photo (©Fuchs) More than 60 participants at the general assembly of CIA)

CIA Chairman Johann Horak

An excellent opportunity for socializing, that´s Cochlea Implantat Austria’s annual general assembly. Members and guests met on June 11th in Totzenbach, about 50 kilometers west of Vienna, to exchange information and enjoy the local cuisine.

For the first time in a long time, the general assembly of Cochlea Implant Austria, CIA, took place at Gasthaus Gnasmüller in Totzenbach, Lower Austria. We were pleased to welcome 64 participants. Among them were many guests such as Max Schlögel, senior speech therapist at the St Pölten University Hospital, and DI Willibert Gedlicka. From the early days of cochlear implantation until his retirement, the technician had worked with CI users as an engineer at the Vienna University Hospital.

Regional Cuisine and Local Delicacies - Meat for the Meeting

The CIA was guest at the Wallner family for general assembly for many years. Manfred Wallner, longstanding CI-user himself, and his family ran a typical Austrian Heuriger just outside of Vienna. When the Wallners stopped running the Heuriger, the CIA had to look for a new home for meetings. So it returned to where assemblies had taken place twice before in the CIA’s founding days - this year it was the third time its members enjoyed the typical country-side culinary art at Gnasmüller.

Transparency and Growth

Like most self-help and special interest groups, the CIA is an Austrian “Verein”, a registered type of association whose most important characteristic is its non-profit orientation. As such, law dictates details about the board and core topics to be covered at the annual general assembly, where we look back on the events of the past year and take important decisions for the upcoming year.  The CIA board remains unchanged for the next year.

CIA members live all over Austria, some even abroad. Despite the vacation time and travel distance, 64 members found their way to Totzenbach. Another 25 new members could be accepted to the CIA at the general assembly. We are thrilled about our growing numbers and look forward to welcome many of them personally at the next CIA event.

Across the borders

While there are obligate parts of general assembly, informative presentations were also on the agenda.

CIA president Prof. Dr. Wolf-Dieter Baumgartner reported on his responsibilities at the Vienna University Hospital and the Karolinska University Hospital in Stockholm, Sweden, where he performs cochlear implantations, teaches at university and trains other medical doctors.  The implant specialist portrayed the CI situation in Austria in an international context, looking at Newborn Hearing Screening, aftercare and the current influx of refugees and its consequences on implant programs. The situation in Austria is satisfying, even if some challenges still remain.

Industry News

In a guest talk, DI Ewald Thurner, Area Manager of MED-EL Austria, presented their latest products. Particularly interesting for CI users: The recently launched rechargeable battery packs for the new Sonnet audio processor. They are beneficial not only for CI users but also for the environment.

DI Dominik Richnovsky, Head Engineer of the new “Zentrum Hören” (Hearing Center) narrated the opening of the patient care center in Vienna. Its technicians offer extensive services to CI users.

Helping Hands

The CIA board was represented by president Prof. Dr. Wolf-Dieter Baumgartner MA, Trude Moser, chairwoman of CIA Lower Austria, Karl Heinz Fuchs, executive chairman CIA Austria, secretary Mag. Michael Wollrab, and treasurer Hilde Renner, as well as myself, Hans Horak, chairman and founder of CIA Austria.

A general assembly requires quite some preparation, for which a team of volunteers sacrificed a day off, to help with the organization and the technical aspects. I would like to again express my gratitude to all of them, including the team of Gasthaus Gnasmüller. The CIA has been heartily welcomed and pampered with many a delicacy and good drop at several events already.


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AUSTRIA - Active Summer for CIA-NOE

(Photo (©Katzbauer) Summer-party at Family Moser´s garden – Trude Moser, chairwoman and host, in first row in the middle)

Karl-Heinz Fuchs and Trude Moser

This summer Gertrude Moser, chairwoman of CIA-NOE, again organized several events for her group. CIA-NOE is a very active group of the Austrian CIA, including adults who live in or have personal contact to Lower Austria, the countryside around Vienna. Usually they meet once a month at a restaurant to talk and share news, but in summer time they have a special program.

The Summer program started in June with an excursion to Stift Seitensetten, St. Michael am Bruckbach and another small chapel in ‘St. Georgen in der Klaus’. The best known of the three is Stift Seitenstetten, a catholic men´s convent from the early 12th century. You can enjoy not only guided tours there, but also a wonderful garden. In fine weather the bus comfortably drove all participants form site to site, along a ridge with a beautiful view. Photo shootings, walks, a coffee-break and a happy ending at a Heuriger were also part of the excursion.

For July Trude Moser, also founder of CIA-NOE, organized a visit at Heuriger Staudenmayer, a typical Austrian wine tavern in a village about 80km west of Vienna. The actual address of the Heuriger made participants smile: “Traubenweg”, which means “Grape-Path”. Those present comfortably enjoyed a snack while chairwoman Moser introduced them into activities and schedules for the next working year.

On August 27th, chairwoman Moser invited her group for a summer-party. 33 participants met from 1 p.m. on at Family Moser´s private garden and started the party with home-made sweets and Champagne. The thermometer showed 30 – 34 degrees Celsius that afternoon, pretty high for that part of Austria. Soon the small-talk moved over to the Moser´s pool. Later on the meeting they transferred to restaurant Gnasmüller in Totzenbach, where a buffet was prepared for the participants. Franz Leichtfried, retired master baker and longstanding member of CIA-NOE, contributed self-made bakery to a successful afternoon meeting. Thank you to all those who supported the party!


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AUSTRIA – Usher Syndrome support

We are happy to announce some important news for people with Usher Syndrome.

Firstly, in Austria, there is a new patient group, called “Forum for Usher Syndrome, Combined Hearing and Vision Loss and Deafblindness”, short form “Usher Deafblind Forum Austria”.  Please see the website https://usher-taubblind.at/ .  For more information, please e-mail Julia Moser and Dominique Sturz at This email address is being protected from spambots. You need JavaScript enabled to view it.

Secondly, the International Scientific Usher Syndrome Symposium and Family Day in cooperation with the US Usher Syndrome Coalition and the German patient group “Leben mit Usher Syndrom” is to be held in Germany in July 2018.  The International Symposium on Usher Syndrome is to be held on 19 & 20 July 2018; and the Usher Syndrome Family Conference will be on 21 July.  Both these events are at JGU Mainz Campus “Alte Mensa”, Mainz, Germany.  For further information, please contact This email address is being protected from spambots. You need JavaScript enabled to view it. .  Although these conferences are 22 months away, we are all so busy that it would be appreciated if you could put the above dates in your diaries!

Having this conference in Europe and especially in Germany is unique and spectacular.  It is important for European researchers to connect with the international research; and it is also very important for people with Usher Syndrome, combined hearing and vision loss and deafblindness to get connected to international research and therapy options.

It is crucial to connect with the international and European Usher Community in order to be a stronger interest group, so please pass on the above details to anyone you think would be interested.


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DENMARK - The Ida Institute - “The Journey of Life”

The original presentation of the tool idea at the seminar

(Photo: The original presentation of the tool idea at the seminar)

The Ida Institute is beginning work on a new clinical tool for children with cochlear implants and their families. The tool, working title, “The Journey of Life”, will aim to help HCPs structure a conversation with the child and family about short- and long-term goals on their life long journey with hearing loss. By looking at both the bigger picture and immediate next steps paving the way to a certain goal or transition in the child’s life, professionals and children and their families can put the journey into perspective and make a plan for activities and steps needed to succeed.

The tool is designed with the visual of a train ride, with different stations along the tracks symbolizing the different milestones in life. Like a real train journey, the path is not linear, and often shifts and bends with landscape.

The milestones along the figurative train route can represent changes in education level, or more abstract concepts related to children’s confidence and independence, but all are crucial to their ability to self-manage their hearing impairment. The tool will provide a map for long-term goals for families to keep track of through the child’s development, and encourage discussion about topics such as everyday needs, technology, and resources, in relation to the child’s development. The tool is being designed for clinical use with children ages 0-12, and for families and children to go through the journey at their own pace.

The Journey of Life is a counseling tool to be used by clinicians to work with families and children, taking a long view on life by setting short-term goals for the patient to reach. There will be an option for parents to take home materials to work with their children, as recommended by the hearing care professional.

The tool is also intended to show progress along the journey, so that parents and children can appreciate how far they’ve come in their development.

The Journey of life began as a product of the Ida Institute’s 2015 seminar, Successes, Gaps, and Challenges in CI Rehabilitation: The CI Journey for Children and their Families. The same seminar also yielded My Turn to Talk, an interactive online tool for parents of children with cochlear implants to complete as preparation for clinical appointments.

Ida Institute staff will be joined by outside collaborators on this project. The following participants are collaborating with Ida on the tool:

  • Carolyne Edwards,  Canada
  • Vivan Gies, Canada
  • Amy Szarkowsky, USA
  • Kalyani Mandke, India
  • Nancy Muscato, USA
  • Beth Atkinson, AU

All of the members of the working group were originally participants in the Ida Institute’s 2015 seminar. Though the idea for the tool was initially conceived at our seminar, development is continuing through virtual meetings and processes.

The Journey of Life is still in the early stages of development, but it is expected to launch in early 2017.


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HUNGARY - Peter is going to hear - a tale book about a little boy’s CI story

EURO-CIU members got a little taste about a unique tale book written by a mother about her son’s cochlear implant operation in April is Varese. In co-operation of the award-winning BOOKR Kids Hungarian Cochlear Implant Association is happy to present this e-book in 2 foreign languages in the virtual library of the BOOKR Kids App.

BOOKR Kids offers children a wonderful tool for reading: an easy-to-use eBook application, enhanced with interactive digital features such as read-along word highlighting, audio playback and engaging story narration. Available both in iOS and Android, the digital library offers mobile access to more than 130 classic and modern children’s stories, BOOKR Kids originals and content from authors around the world, in 4 languages at the moment: Hungarian, English, German and Norwegian.

As an official partner of the Hungarian Educational Research and Development Institute, and other organizations, like the Hungarian Cochlear Implant Association, BOOKR Kids is well positioned to create educational and entertaining content and also focuses on social issues and kids with special needs: they have stories on dealing with serious illnesses and different disabilities as well - such as the story of Peter, the cochlear implanted little boy.

The book is available from the end of September on BOOKR Kids App in Hungarian, German and English. Further languages such as Italian, Finish, Spanish, Norwegian, Turkish coming soon in the rest of this year and beginning of 2017. The library has 3 subscription category: https://www.bookrkids.hu/?lang=en#shop


Please note, that significant part of the subscription goes to the Hungarian Cochlear Implant Association to support our aims.


If you need further information or would like to make available to book in your language please contact:

Ervin Bonecz
president of Hungarian Cochlear Implant Association
This email address is being protected from spambots. You need JavaScript enabled to view it.


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ITALY - Varese Audiology Department

Full conference room

Also this year A.G.U.A.V has organized the usual event for its members.

About 700 people met on June the 12th to celebrate the success of Varese Audiology department, one of the best in Europe for the treatment of deafness.

Some of our patients told their experience and stories witnessing the results gained with Varese rehabilitation method and some told their experience in finding funds trying to help the association.


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ITALY - new fairy tale

Cover of book

Manuela, the aunt of an implanted child, has written a beautiful tale entitled: “la principessa e la chiocciolina perduta…”  a fairy tale about a princess affected by profound deafness and this will make her very special ..also with the help of some magic.

This fairy tale was written to help AGUAV and all the income will be donated by the author to our association.


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ITALY - Camelot at Villa Cagnola

Children dressed as army of King Arthur

Meanwhile outside…Villa Cagnola was turned into the legendary Camelot and all the children, completely dressed up in middle ages costumes, became the army of King Arthur, engaged in the conquer of the Holy Grail, fighting cruel Morgana with her horrible trolls who will be finally defated thanks to the heroic feats of Lancelot and to the advice of Magician Merlin.

The fancy adventures lived by our children ended up with King Arthur coronation and love declaration to beautiful Geneve.


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PORTUGAL - More than 1,500 professionals attended the XIII Congress of the European Society of Pediatric Otorhinolaryngology

Lisbon

(Photo - Lisbon)

ESPO2016, XIII Congress of the European Society of Pediatric Otorhinolaryngology (ORL), took place in Lisbon from 18th to 21th June

The event offered a common platform for more than 1,500 international professionals in the field of pediatric hearing loss, and has recently become one of the most important events for all experts in the field. Discussions and presentations included clinical practice in cochlear implantation, respiratory tract studies, rhinology, basic sciences and general pediatric ORL approaches.

MED-EL organized a press meeting on the last day of the congress. Renowned surgeons such as Dra. Luisa Monteiro (ORL services coordinator of Lusiadas Hospital), Dr. Quadros (Surgery center of Coimbra Director), Dr. Correia (ORL services coordinator and clinical director of Hospital CUF Porto), Dr. Altuna (Head of ORL service Hospital Universitario Donostia at San Sebastián) and Dr. Haag (Head of ORL section service of Hospital Sant Joan de Déu at Barcelona), had the chance to openly discuss  challenges in pediatric ORL and the best treatment options available for children with hearing loss.

“The cochlear implant is increasingly becoming a beneficial therapeutic option, due to less traumatic surgical techniques” says Dr. Haag.

Ever more people are affected by hearing loss, especially due to factors such as population growth and longer life expectancy. In 2013, around 63.6 million people already suffered from some kind of hearing loss in Europe. This number is expected to rise to 69.3 million people by 2017.

According to experts the next challenge in pediatric ORL will be to expand CI indications to include single-sided deafness. 

http://www.espo2016.com/


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SPAIN - Spanish Summer Camp

Summer camp images

Second year success in the Spanish Summer Camp

After last year's success, the Federación AICE decided to try to repeat the adventure of having an exclusive cochlear implant summer camp in Spain apart from participating in the EFW 2016. So this year, from the 1th to 9th July, 35 teens of 10 to 17 years old (11 more than last year) from all over Spain gathered in Extremadura, close to Portugal's border for a camp surrounded by nature. This year's objective was give our teens a real experience away from home where they could swim in a river, take care of farm animals, discover the planets and stars with telescopes, as well as do adventure activities like climbing, canoeing, zip-lining, paintball, etc.

Communication and self-esteem are essential in this camp, this is why kids have to present themselves in front of others and they receive some conferences to learn about the cochlear implant, accessibility and new technologies. This year a cyber-bullying conference done by the police was included to make the teens understand the danger in the net, how to prepare themselves and the importance to ask for help in case they need it.

After this two years' success, Federación AICE will surely continue in this path building a better future for our kids starting with helping them to grow up in experiences where there is leisure but at the same time they can feel safe, among their peers and we control nothing bad happens to their cochlear implants because all activities and eventualities have been prepared with this teens in mind. Federación AICE wants to finish by publicly thanking MED-EL for agreeing to a summer camp grant to one kid without means to join this amazing holiday.


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SWEDEN - Nordic Conference – From Family Intervention to Education

Professor Hans Rosling and Ann-Charlotte Gyllenram

(Photo: Professor Hans Rosling and Ann-Charlotte Gyllenram from NCFIE 2014 in Stockholm. Photo: Barnplantorna)

Report from Barnplantorna Sweden NCFIE 2016
Nordic Conference – From Family Intervention to Education

Barnplantorna, the National Association for Children with Cochlear Implants and Hearing Aids has since 1995 been one of the leading motivators in organising conferences with the purpose to move forward work concerning family intervention and education.  Early intervention and on-going suppport are requisites in the management of families with children who have significant hearing loss.  Current research results, development and implementation of interventional programs should be available to parents and professional.  This is still not the reality in Sweden and many other countries.  Technology is moving forward quickly, but intervention and education/school systems are lagging behind.

NCFIE 2014 in Stockholm was a cooperation between Barnplantorna and the CI-clinic in Karolinska university hospital (KUS)  The aim was to move forward concerning family intervention and education for deaf ad hearing impaired children of today.  We wanted to link together family intervention, education and research into everyday life and practice for children and with children.

NCFIE 2016 aim to continue that task, linking together professionals within different fields as well as researchers and parents receiving the same up to date information and with a mutual task - the children.

It is high time to take the step from words and rhetoric to action (not only action plans!).  The question for NCFIE 2016 in Gothenburg (cooperation between Barnplantorna and Sahlgrenska university hospital, SU ENT/CI clinic) is what makes a difference for children with hearing impairment?  What evidens do we have?  The program committe includes researchers from Sweden, Norway and Netherland as well as representatives from Barnplantorna and MD from SU ENT/CI clinic.

Are we all ready for the challenges with hearing technology moving forward quickly?  We need family intervention, education, hearing technology, professionals, parents as well as users (children, adolescents) to create a balance, and working together in sharing knowledge.  All for the best of the children.  That is the important aim of this conference and also why a parent organisation works together with professionals in organising it.

On the third and fourth of October 200 participants will be in Gothenburg, Sweden to listen to speakers such as Elizabeth Fitzpatrick from Canada, Shani Dettman from Australia, Astrid van Wieringer from The Netherlands and many others.  Subjects will be intervention, education, empowerment, cognition, life quality, maternal input, support and a young man talking about how he has from the beginning, as a CI-user, been in charge of his own hearing training in real life.

Can it be better?  Hardly!  We are looking forward in welcoming everyone to Gothenburg and Wallenberg Conference center on 3 & 4 October 2016.

More information www.ncfie.se

Ann-Charlotte Gyllenram
President
BARNPLANTORNA


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UK - SoundSpace Online

SoundSpace Online home page

(Image: SoundSpace Online home page)

The “go to” place for online information, resources and learning about hearing loss

Based on discussions and anecdotal evidence from those with hearing loss, families, and professionals, and studies in the literature, information on hearing loss can be difficult to access because it is spread in so many different places, in so many different forms. There is a huge amount of material on hearing loss out there, both on the internet and offline, which is constantly being updated, but it's difficult for people to know where to begin looking. 

Following this, The Ear Foundation has created a major innovation in the field of hearing loss, SoundSpace Online, the only website of its kind which brings together a wide range of practical resources and information available on hearing loss in one place. The website is up-to-date, concise, evidence-based, contains wide-ranged information and resources on hearing loss and improves accessibility. SoundSpace Online aims to gather accessible information for people of all ages with hearing loss, their families, professionals working with them, as well as policy makers and funders of services in the sector - and anyone else interested in learning more about hearing loss. The website provides good quality, readable and usable information, which will constantly be kept up to date.

The website has eight main sections which offer an insight on hearing loss, hearing technologies and scientific medical advances before moving onto the implications of hearing loss on specific groups: special needs, early childhood, school years, higher education and adulthood. Each of these sections has four layers, the deeper you go the more specific the information becomes. The pages include links, references and videos to useful information and resources. On the final two layers, visitors can click on a button to go to Resource Pages of the relevant section, where they can find all links and references and extra ones to take visitors directly to other websites and resources from here as well. A search function and sitemap are also included on the website for easy navigation, and options to contact and ask questions are available.  Section 1 of SoundSpace Online is now available online, which provides an overview of hearing loss and serves as a comprehensive introduction to the sections to come.

The website is a collaboration between people with hearing loss and users of hearing devices, their families, friends, industry partners and professionals from many different disciplines, such as audiology, e-learning, social work and education.

Since our previous article in the EURO-CIU newsletter, Section 1 of SoundSpace Online has been launched and is now available at http://www.soundspaceonline.com/. Go and have a look – we are sure you will find something interesting!


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UK - Are We There Yet? – Supporting Children with Cochlear Implants

Course at The Ear Foundation

With the rate of change in available technology, education and supports to aid deaf people to have access to sound, develop spoken language and reach their potential it is imperative for those engaged in the field to ensure their knowledge is current and progressive. Children are being screened and diagnosed early, receiving technology earlier than ever before and have access to early intervention supports, however recipients often still are not making the progress comparative to their peers in school, can suffer from social isolation, experience problems due to lack of awareness of their specific needs, and often times struggle to reach their full potential. Mainstream educational settings around the world are receiving increasing numbers of children who have cochlear implants, this increases the need for mainstream educators to build their understanding of how best to support these students in their schools and classrooms.

In response to this, The Ear Foundation, continues to push forward in:

  • providing support to children and families who have chosen to develop listening and spoken language skills through the use of cochlear implants and other hearing technology
  • provision of training and education programs for parents and professionals with an interest in hearing loss on both a local level and internationally.
  • consultation and collaboration with professionals and programs internationally to provide training options.
  • research into current and relevant issues which directly influence the daily lives of deaf people and the practitioners in this field.

The Ear Foundation continues to be innovative in provision of education services, with everything from face to face workshops and conferences, to virtual conferences, to independent study using online learning including courses from our prospectus and tailor-made programs to meet individual needs. Continued development of resources is a priority, many of them being available in languages other than English.

Increased participation and positive outcomes for students with cochlear implants continue to be central to both the education and family programs. Recently the family program has been involved in residential programs for young and older teens as well as day programs for primary age children and our early years children and their families. These programs aim to give opportunities for deaf and hearing impaired children to meet each other and develop their listening, spoken language and social skills. These important areas of development are mirrored in the inclusion of new courses in ‘Social Thinking’ for teenagers and the continued development of courses in the primary and infant/toddler programs.

We can come to you – or you can come to us with easy access from Birmingham and East Midlands airports! For more information on the programs available both in the UK and internationally please contact our Education Program Organiser, Susanna Holt on +44 (0)115 942 1985 or email This email address is being protected from spambots. You need JavaScript enabled to view it.


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ADVANCED BIONICS - Hear the world foundation provides 1.8 million Swiss francs in support for people with hearing loss

A world in which everyone has the chance to enjoy good hearing – this is the ambitious goal pursued by the Hear The World Foundation. Sonova established this non-profit organization to help people with hearing loss all over the world who are in need of aid. In the 2015/16 financial year, the Swiss foundation provided over 1.86 million Swiss francs’ worth of support for 23 projects in 18 countries by donating hearing solutions and supplying funding and professional expertise.

The highlights at a glance

  • A total of CHF 1.86 million in support provided for 23 projects in 18 countries.
  • More than 1,000 hearing aids and wireless microphone systems donated, with professional fittings and follow-up care provided.
  • 510 Sonova employees devoted 610 days to voluntary work or fundraising projects.

Focusing on children with hearing loss

Providing audiological care for children with hearing loss is one area the Hear the World Foundation focuses its attention. For children in low- or middle-income countries , hearing loss has profound implications: it means they are unable to learn to speak and are therefore denied access to a school education leading to fewer prospects for the future. With this in mind, the Hear the World Foundation supports projects across the globe that give children the opportunity to develop at an appropriate rate for their age and reach their full potential. In Armenia, for example, help from Hear the World has made it possible to carry out over 2,000 audiological examinations. Furthermore, the Dominican Republic has seen the opening of a new audiology clinic and the launch of a newborn hearing screening program. Providing high-quality and sustainable care is always a top priority for the Hear the World Foundation. “Our aim is to ensure that children in low-income countries receive the same standard of audiological care as those from higher-earning backgrounds,” explains Lukas Braunschweiler, President of the Hear the World Foundation and CEO of Sonova. “That’s why we make sure our project partners have state-of-the-art hearing aids and the right equipment for fitting them at their disposal.”

Prevention: a key part of the foundation’s work

Another core area of the foundation’s work is prevention. According to the World Health Organization (WHO), 1.1 billion young people worldwide put their hearing at risk through their listening habits, while a staggering 60% of all cases of hearing loss in children are avoidable (1). In low- to middle-income countries, the figures are even more alarming: In Cambodia, for example, three out of four instances of hearing loss in children could have been prevented. The most common causes of hearing damage in Cambodia include inadequate treatment of middle ear infections, excessive doses of malaria medication, and trauma due to land mines. The Hear the World Foundation is therefore supporting five clinics that provide treatment for the country’s poorest people, thus ensuring that over 24,000 patients a year receive audiological care. Since the challenges involved in prevention vary from country to country, the foundation tailors its programs accordingly. It also campaigns to promote prevention back home in Switzerland. Last year, for instance, more than 500,000 earplugs were handed out to Swiss concert-goers. The importance of the work carried out by Hear the World is highlighted by the WHO statistics: Around one sixth of adults across the world are affected (2); by hearing loss, and 32 million children experience this condition to a moderate or severe degree. The problem here is not a shortage of audiological solutions, but a lack of resources. Most of those affected live in low- to middle-income countries and often have very limited access – if any – to audiological care. In developing countries, for example, only one in 40 people with hearing loss wears a hearing aid (3).

510 Sonova employees have been getting involved

The voluntary work and fundraising campaigns carried out by Sonova staff form an important part of the foundation’s activities. In the year under review, a total of 510 employees – over 5% of Sonova’s workforce worldwide – devoted 610 days to voluntary work for Hear the World. This was almost double the number who got involved in the previous year. “By volunteering in the field, our employees help to build up the specialist knowledge and expertise needed for diagnosing hearing loss and fitting hearing aids at local level. This enables the Hear the World Foundation to guarantee sustainable audiological care and create jobs locally,” explains Lukas Braunschweiler.

The 10th anniversary of the Hear the World Foundation

The Hear the World Foundation is set to continue providing a comparable level of support for people with hearing loss in the new financial year. In addition to the 16 ongoing projects running for several years, eight new projects have been selected from a large number of applications. In the year in which it celebrates its 10th anniversary, the foundation will also reach a new milestone as it donates the first cochlear implants for children with severe hearing loss in Panama – yet another vital step towards creating a world in which everyone has the chance to enjoy good hearing.

The Hear the World Foundation Activity Report 2015/16

Further information about the foundation and its projects can be found here.

(1) Source: WHO Childhood Hearing Loss, Act Now, Here is How (2016)
(2) Source: WHO, The global burden of disease: 2004 update (2008)
(3) Source: WHO Factsheet Number 300 (2012)


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ADVANCED BIONICS - The listening room now available in Spanish

For Spanish-speaking families or professionals, the journey to hearing just got much easier and a lot more fun! Advanced Bionics has launched a new, Spanish-language version of The Listening Room™ rehabilitation website.

AB’s one-of-a-kind, feature-rich website offers fun, engaging, and effective rehab exercises tailored for children with hearing loss. Uniquely designed activities help:

  • LEARN LISTENING SKILLS
  • DEVELOP LANGUAGE ABILITIES
  • APPRECIATE MUSIC
  • AND MUCH MORE…

Families and professionals visiting TheListeningRoom.com can now switch between English and Spanish versions of the website and use a language filter to discover Spanish-language content.

Get started today. Visit TheListeningRoom.com.

For more information on all Advanced Bionics rehAB and educational resources, visit AdvancedBionics.com or email This email address is being protected from spambots. You need JavaScript enabled to view it.


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MED-EL - MED-EL Supports Second International Music Festival for Hearing Implant Users

The winners!

‘Beats of Cochlea’ music event helps people with hearing loss to fulfil their musical dreams

Hearing loss is no longer an obstacle to developing a musical talent or appreciating music, as highlighted at this year’s International ‘Beats of Cochlea’ Music Festival for Children, Youths and Adults with Hearing Disorders. Sponsored by MED-EL, the festival celebrated music enthusiasts in a unique event which took place from 11-14 July 2016, in Warsaw, Poland.

Johanna Pätzold, MED-EL’s in house musicologist, said: “Beats of Cochlea helps children, youths and adults to fulfil their musical dreams. As a leading provider of hearing implant solutions, we are delighted to support an event that celebrates the joy that music brings to the lives of people living with hearing loss. We hope the festival motivates the participants to continue to pursue their passion for music.”

Celebrating the musical talents of people with auditory implants

‘Beats of Cochlea’ – an international competition specifically for people with musical talents who use an auditory implant/s for their hearing loss – was created by Polish surgeon Professor Henryk Skarżyński. In 1992 Professor Skarżyński was the first surgeon in Poland to perform cochlear implantation surgery in a totally deaf patient. Following the success of the inaugural festival in 2015, this year’s event demonstrated that, with today’s achievements in modern science and medicine, even those with severe hearing loss can have a passion for music which fulfils their lives.

The 2016 festival by numbers

One hundred and fifty hearing implant recipients from countries such as Canada, Ecuador, Georgia, Germany, Kazakhstan, Poland, Russia, Slovakia, Turkey, Ukraine and the United States applied to participate. Thirty two qualified to attend auditions in Warsaw, from which ten were selected to perform at a gala concert on 13 July 2016.

‘Beats of Cochlea’ – the winners

Ten outstanding performers were recognised at the gala concert, including Aigerim Tutova aged 22 from Kazakhstan who performed a song; Nurbol Seydulla aged eight also from Kazakhstan who played a national instrument; Nikita Milutin aged seven from Russia who performed a piece on the piano; and Daria Władzińska aged 14 who played the violin.

To learn more about MED-EL and the programmes and initatives the company supports visit: www.medel.com


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MED-EL - Britons identify Bohemian Rhapsody as the song they would miss the most if they lost their hearing

New research from MED-EL, designed to highlight the impact of hearing loss and the importance of receiving early diagnosis, has shown that shown that Queen’s operatic rock anthem, Bohemian Rhapsody is the song Britons would miss the most if they were to lose their hearing.

More than 1,000 Britons from across the United Kingdom were asked to consider what key sounds in life they would miss the most if they were no longer able to hear. Queen’s much-loved song, consistently voted the top rock tune of all time, was picked by 16% of people, closely followed by Louis Armstrong classic What a Wonderful World (7.7%) and John Lennon’s Imagine (7.4%).

Alongside the launch of the new research, MED-EL joined forces with NHS Trusts in London, Scotland and Southampton this September to offer free hearing screening as part of a national roadshow, called Life on Mute.

Wanda Alesky, auditory implant coordinator at London’s Royal National Throat, Nose and Ear Hospital, said: “On average it takes ten years for people to address their hearing loss so this campaign is about addressing your hearing issues early by visiting your GP or a specialist and maintaining regular check-ups. We wanted to get involved because the thought of losing your hearing can obviously be worrying but there’s a lot people can do about it.”

As part of the research, people were also asked what musical instruments they would miss hearing the most, with the most popular being the piano mentioned by a third of respondents. Other instruments that would be missed included the electric guitar (15.1%) and its acoustic counterpart (14.9%).

Cassandra Brown, Managing Director, MED-EL UK said, “As a company that develops treatment options for people with hearing loss, we feel we have a responsibility to help improve the UK’s hearing health. We are delighted therefore to be able to support the NHS in encouraging people to get their hearing tested.”


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