Having trouble viewing this email? View it in your browser
| SEPTEMBER 2025 | |
In this issue :
|
|
Message from the President
Welcome to the latest edition of the EURO-CIU Mail! I’m pleased to share a new issue filled with inspiring articles and updates from our members, friends, and supporters across Europe. This edition includes a special feature on ESPCI 2025 – a memorable event that brought together professionals, advocates, and CI users in Hannover. I encourage you to read more about the symposium and its impact. We also recently held our extraordinary online General Assembly, where important topics were discussed and decisions made for the future of our organization. Thank you to everyone who participated and contributed. I wish you much enjoyment and insight as you explore this newsletter. Warm regards, Tobias Fischer Message from the Editor of the EURO-CIU Newsletter
Many thanks for your contributions – it’s good to hear from you all. We are also grateful to the cochlear implant companies for keeping us up to date. As always, there are a lot of articles and photographs in this edition. Please feel free to forward this Newsletter to Members of Parliament, Members of the European Parliament, friends, colleagues and members of your own organisations. We are keen to increase the number of people who can read about the benefits of cochlear implantation. Let’s get the message across! If anyone you know would like to receive their own copy of this newsletter, just send me their email address. The next edition will be due in December, so please let me have your articles and jpg photos by Monday 1 December 2024. Just e-mail them to me at [email protected] With every good wish. Brian Archbold (Editor) EURO-CIU NEWS – Successful Extraordinary General Assembly of EURO-CIU
Chaired by Leo De Raeve, the meeting was conducted in a very constructive and engaged atmosphere. Important topics were discussed in depth and moved forward collaboratively. Thanks to the open exchange and active participation of all members, the Assembly concluded successfully – once again highlighting the strength and cooperation within EURO-CIU. EURO-CIU NEWS – ESPCI 2025 – Professional Exchange and Personal Milestones
From 11 to 14 June 2025, the European Symposium on Paediatric Cochlear Implantation (ESPCI) took place at the Hannover Congress Centrum (HCC). This renowned international conference once again brought together experts from medicine, audiology, education, and patient organizations to discuss current developments, present innovations, and promote international collaboration in the field of cochlear implantation. For Tobias Fischer, this year’s symposium held special personal significance: on 14 June 1988, he received his cochlear implant at the Medical University of Hannover (MHH), becoming the first child in Europe to undergo this procedure. Exactly 37 years later, he returned to Hannover to deliver the opening speech at ESPCI 2025 – a symbolic moment that powerfully highlighted the city’s pioneering role in the history of cochlear implantation. EURO-CIU was prominently represented throughout the symposium. President Tobias Fischer participated in two round table discussions – alongside experts such as Leo De Raeve and Sue Archbold – focusing on key topics including rehabilitation, European standards of care, and the role of patient advocacy. In addition, EURO-CIU joined CIICA and the Lehnhardt Foundation at a shared information booth, which quickly became a central hub for exchange and networking. ESPCI 2025 was a successful blend of scientific innovation, international cooperation, and historical reflection. It clearly demonstrated how professional expertise, technological advancement, and the commitment of those affected continue to work hand in hand to improve the quality of life for children with cochlear implants. EURO-CIU NEWS – Our President gave the Opening Speech at ESPCI 2025
Our President, Tobias Fischer gave the Opening Speech at ESPCI 2025, and here is his speech. It is a great honour to be here for the launch of ESPCI 2025. For me, being here is an extremely personal highlight. In 1988, I was the first child in Europe to receive a cochlear implant – right here, at the MHH. Almost exactly 37 years ago to that day, I lay on an operating table in this city. I was just a child – not knowing what was happening, not knowing what the years would bring. And now, standing here all these years later, I am filled with emotion. Because I know that without that moment, and without the courage, vision, and dedication of so many individuals – I would not be standing here before you today. This moment is not mine alone. It belongs to a much larger story. It belongs to my parents, who were brave enough to invest in something new and unknown. They took a risk, not because they were promised guarantees, but because they had hope. They hoped that this technology might give me a future full of connections, possibilities, and voice. It is Prof. Dr. Ernst Lehnhardt’s and the entire MHH team’s, whose innovative work transformed that hope into reality. In 1988, cochlear implantation was in its early stages – an evolving discipline, full of controversy, promise, and uncertainty. But here in Germany, in the heart of Europe, something truly remarkable unfolded. The vision became reality. And the impact of that vision is still felt to this day. While cochlear implants had already begun to take shape across the globe, it was here in Germany that some of the earliest and most important medical, technical, and social foundations were laid – foundations that would support the evolution of cochlear implantation across Europe and around the world. So, this stage, this congress, and this city are all highly symbolic for me. Hannover was the beginning of my journey – and the journey of so many others who have since followed. But today is not just about looking back. It is also about looking forward to it. As President of EURO-CIU – the European Association of Cochlear Implant Users – and President of ÖCIG, the Austrian CI Association, I have the privilege and the duty to speak now for the voice of thousands of CI users on our continent. Our community is growing – and with it, our mission becomes even more essential. We must continue to push for more access to implants for all who need them. Too many people across Europe still face long waiting lists, limited funding, or a lack of awareness among healthcare professionals and policymakers. Hearing loss is a public health issue – and cochlear implants aren’t a luxury, but a necessity for many people. We must also work to offer a lifetime of support for CI users. A cochlear implant is not a one-time procedure – it is a lifelong process. From surgery, to activation, to rehabilitation, to living life fully integrated into society – all need support, education, and understanding. We must ensure that the voices of users – people like me – are heard: in research, in policy, in product development, and at every level where decisions are made about our lives. Because only those who live every day with a cochlear implant can truly speak to the realities, the challenges, and the possibilities that it brings. At EURO-CIU, we are dedicated to making sure that users are not just passive recipients of technology, but active agents in the future of hearing care. We work in partnership with associations, manufacturers, clinicians, and researchers – and I’d like to take a moment to thank each of you for your collaboration and your openness to listening and discussion. Innovation doesn’t happen in isolation. It happens when we work together – across fields, borders, and backgrounds. And if there is one institution where this spirit of collaboration is alive and well, it is right here – at ESPCI. This congress brings together not only some of the world’s leading minds in audiology, otology, speech therapy, and rehabilitation, but also the life experience of users, families, and advocates. Together, we are creating a better future – one where hearing loss need not mean silence, isolation, or limitation, but instead, connection, empowerment, and full participation in society. I would like to conclude with a personal reflection. Over the years, I have been questioned by many people: “What is the cochlear implant to you?” It is a tricky question to answer, as it is not merely a device to me. It is a piece of who I am. It has shaped my education, my friends, my professional life, and my access to the world. But most of all, it has given me something that’s hard to put into words: the strength that comes from belonging. And for that, I will be forever grateful. To my parents – thank you. To the MHH team – thank you. To the pioneers in the room today – thank you. And to the next generation of professionals, researchers, and CI users – keep believing, keep pushing, and keep listening. For together, we can make hearing a reality for all those who need it. Thank you and I wish you all an inspiring and successful ESPCI 2025. EURO-CIU NEWS – ONICI & Artevelde University of Applied Sciences (Ghent-Belgium) are planning an international postgraduate course on Rehab of CI-users. We need your input.
The program will combine digital self-study packages, interactive online sessions, and a few intensive contact days in Ghent (Belgium). Do you work with children or adults with hearing loss or a CI-user yourself and you are interested in this course? We need your input! Complete our short survey (± 5 minutes) by September 20 and help us shape this program to better meet the needs of professionals in the field. You can find the link to the survey here: https://forms.office.com/e/nZgstELNeu Those who fill in their e-mail in the survey will automatically receive further information concerning this course. Thank you for your time and valuable input! Dr Leo De Raeve CIICA CONVERSATION: CI for Older People: the opportunities and challenges. 23 September, 7pm UK time
Many CI clinics report that the fastest growing group coming for CI is the older population. A CIICA LIVE event held in June, “CI IN OLDER PEOPLE, WHAT DO WE KNOW?” led by Cathy Birman, CI surgeon and specialist, Sydney, explored the issues for CI users and those delivering the services. Go to CIICA LIVE: CI IN OLDER PEOPLE: WHAT DO WE KNOW? – CIICA to see the fascinating and moving presentations. The next CIICA CONVERSATION on this topic (on Tuesday 23 September) will give the opportunity for both users and clinicians to discuss the real-life opportunities and challenges CI when you are older brings. Some you will not have thought of – so come and join the discussion! Go to ADULTS WITH CI: OPPORTUNITIES & CHALLENGES IN LATER LIFE – CIICA . CIICA has a resource “Why Hearing Well Matters for Healthy Ageing” download here: CIICA and EUROCIU launch new resource: WHY HEARING WELL MATTERS FOR HEALTHY AGEING – CIICA . Download it and come to discuss at the Conversation, led by Kris English, USA, Joey Carlsson, Canada, Sonja Reid, Canada and Sarah Smith UK. EURO-CIU is a founding member of CIICA AUSTRIA – Cochlea Implantat Austria (CIA) – CIA Summer Days for Children with Cochlear Implants
The event kicked off with a CI Info Breakfast, where clinical engineers demonstrated the stapedius reflex measurements live, an objective method to support CI fitting. Many families took the opportunity to try it out during the week. Sunday’s dinner event featured a mobile petting zoo which conquered the hearts of everybody. Meanwhile, the Carinthian Governor, Dr. Peter Kaiser, engaged in a heartfelt conversation with CIA representatives, impressed by the achievements of the young adults with cochlear implants he spoke to. From hiking and zoo visits to lively cocktail evenings and workshops, the week was packed with activities. Parents gained valuable insights into language development and inclusive education, while children explored their creativity in music, dance, and theatre workshops. Emina, mother of two-year old Andre said: With full hearts and new friendships, families returned home, already looking forward to next year’s Summer Days. AUSTRIA – Cochlea Implantat Austria (CIA) – New curricula for children with CI
The new curriculum supplement incorporates proven measures such as offering teaching content not only aurally but also visually or tactilely, providing additional exercises for audio-verbal communication and/or Austrian Sign Language – as needed, implementing compensatory measures during performance assessments, and supporting the use of technical aids such as FM systems. Students and their parents as well as their teachers may now refer to these guidelines when necessary. The individual measures are intended to be implemented fully or partially, depending on each child’s specific needs. At the moment, some questions regarding practical implementation remain open. THE NETHERLANDS – OPCI – A milestone to be proud of: 200 living room meetings!
From that first living room full of chairs, coffee, and cookies… It seems like only yesterday: those first times, a living room full of chairs, the smell of fresh coffee, cookies on the table, and people with expectant looks. Living rooms that transformed into places of understanding, where people thought for the first time: “Finally, someone who understands what it’s like.” We listened to each other, we laughed together, and sometimes a tear was shed. And look where we are now: a national network full of stories, questions, and answers. Two hundred meetings full of connection and support. An inspiring webinar to look ahead together. We didn’t just celebrate this: with a substantive program to be proud of.
After a short break, we looked ahead:
More than information – a source of hope Let’s not forget what these 200 living room meetings truly mean. It’s not just knowledge and information; it’s also hope for those still unsure. Comfort for those struggling. And joy in the small, big moments: hearing a bird sing for the first time, or your granddaughter’s voice. What’s special is that almost all of these meetings (except two!) were organized by Henk van Rees, always assisted by Davy de Bruijn (photo), our trusted sign language interpreter whom you may know from the General Members’ Meetings in Rotterdam and Valencia. And we’re continuing! Because in addition to these meetings, we’re also there for professionals. That’s why we’re organizing a special study day for audiologists and hearing care professionals on September 13th. ENT specialists, clinical physicists, and experts with lived experience will present an inspiring program, led by Henk van Rees. You can read more about that in our next newsletter! Thank you to everyone who made this milestone possible. Together we’ll continue to build a future full of sound! TURKEY – Cochlear Implant Association of Turkey (CID) – Together We Succeeded – Now It’s Time to Inspire!
On June 28, 2025, the Cochlear Implant Association of Turkey (CID) organized an inspiring event at the Biz Ankara Rehabilitation Centre, entitled: “Together We Succeeded – Now It’s Time to Inspire!” This special gathering brought together adult cochlear implant users – who were diagnosed with hearing loss in early childhood and now hold professional careers – to share their personal stories with families at the beginning of the CI journey. The event was held under the leadership of Aylin Özgür, President of CID and Vice President of EURO-CIU. It served as a model for peer-based mentoring and a bridge between CI users, families, academics, and sector stakeholders. In her opening remarks, Aylin Özgür emphasized: “Families at the beginning of this journey are filled with concerns about their child’s future. What challenges will they face? What professions can they pursue? How will they integrate into society? This program is designed to answer those questions not just with statistics, but with real-life testimonies from those who have lived it.” The speakers were young adults who grew up with cochlear implants, never hearing natural sound, yet successfully completed their education and now thrive in a variety of professional fields. Working in biology, sociology, language education, and computer engineering, these individuals have overcome outdated prejudices that once claimed they would “never speak or read.” The moderator of the event was CID Secretary and Biologist Hüseyin Onur İpek, and the speakers were:
Each speaker shared their academic, social, and personal experiences growing up with a cochlear implant. They described how they adapted to digital hearing and how this impacted their development and transition into professional life. The significance of the event extended beyond motivational stories. It also highlighted the importance of integrating real-life user feedback into research, product development, and guidance models. Cochlear implant manufacturers, service providers, and academic institutions increasingly recognize that these real-world perspectives offer a more holistic understanding of the CI experience. The event served three primary goals:
CID remains committed to uniting, uplifting, and giving voice to all users – regardless of brand, region, or age. As a proud member of EURO-CIU, CID ensures that Turkey contributes meaningfully to the global cochlear implant dialogue. This gathering reminded us of a simple but profound truth: With the right support, we don’t just hear – we succeed, and we inspire. LEHNHARDT FOUNDATION – 5,000 km to the next clinic for Anna?
In May, Dr. Monika Lehnhardt-Goriany (co-founder and chairwoman of the Lehnhardt Foundation) received an email from Tatjana from Russia. She was desperately searching the Internet for help for her 3 years old daughter, Anna. Tatjana and Anna live near the Lake Baikal. Anna is deaf as a consequence of severe meningitis. Her auditory nerve is severely damaged, and she has total bilateral ossification of the cochlea. She needs an auditory brainstem implant, the operation, which should be done as soon as possible, is not performed in Russia. With the diagnosis of meningitis in November 2023, Anna’s life was divided into before and after. According to her doctor she had a 1% chance of survival. But she DID survive. After her discharge from the intensive care unit, she could neither stand nor sit, she was too weak to lift her head. After intensive therapy the joy was great when Anna stood up for the first time and even began to walk. But she did not speak and was referred to an ENT specialist. The new diagnosis: Completely deaf. The prognosis: she will remain deaf for the rest of her life. The advice: have Anna classified as hearing impaired and place her in a boarding school for hearing-impaired children. But another doctor said there may be a chance for Anna to hear again by getting an Auditory Brainstem Implant, which is not available in Russia. This was when Tatjana started to search for options abroad and found the link to the Lehnhardt Foundation. “I wrote to Monika, she replied immediately, asked me about our entire history, and found a surgeon for us in Turkey,” recalls Tatjana. Professor Levent Sennaroğlu head of the ENT department of the Faculty of Medicine at Hacettepe University in Ankara. After reviewing all the medical records, which were sent digitally by Monika’s husband, Dr. Michael Goriany, Prof. Sennaroğlu agreed to perform the operation and sent a detailed examination plan and the date for the operation to Tatjana. Just one month after the initial correspondence, in June, the flights were arranged. Tatjana and Anna flew from Moscow to Ankara. “I will never forget the day of the operation – it was very exciting, but I had confidence in the doctors,” says Tatjana. Already one day after the surgery (performed by Prof. Levent Sennaroğlu) Anna was walking through the hospital corridors. At the BIZ Rehabilitation Centre, the expert audiologist Orhan Efe Güven provided all the necessary information about the rehabilitation process while Anna enthusiastically participated in the therapy sessions. The next milestone was the switch-on of the speech processor at the beginning of July. The signal reached Anna’s brain: the time of silence is over! Before returning from Turkey, Anna hears a dog barking and is startled. “The fact that she noticed this and reacted to it is a promising development,” says Aylin Özgür (Vice President of the European Association of Cochlear Implant Users and a wonderful mother of her boy Efe who is an ABI recipient). She supported Tatjana with advice and outstanding assistance during this difficult time. Monika attentively followed the process from Germany. Aylin: “Tatjana is a very strong woman. Despite the language barrier, she came to Ankara. We managed the entire process with the help of artificial intelligence. No matter where we are in the world, we are a family – we share the same concerns and hope for the same things.” After about six months Tatjana and Anna will travel to Ankara once again for a check-up. In the meantime, a program has been put together to ensure the best possible aftercare, even over long distances, and a rehabilitation centre near their home town is actively involved. “I am very happy that there are such excellent specialists in our world – professionals in their field who are 100 percent committed to their work and give all children, despite complex pathologies, the opportunity to live a fulfilling life and have a wonderful childhood filled with the sounds of the world around them,” says Tatjana. “We are delighted we could help Anna pave the way into the world of hearing again and will continue to support her and her impressively strong mother Tatjana” says Monika. Dr. Monika Lehnhardt-Goriany LEHNHARDT FOUNDATION – A little boy, a big dream – and the help that changed his life
My name is Maka. I’m originally from Georgia and now live in Germany with my husband and our three children. Through a Facebook group where Georgians exchange ideas, I met a family who touched me deeply – and whose story I absolutely want to share. The dream of swimming The mother of two children approached me one day. Her younger son, a bright boy with a hearing impairment, dreamed of finally learning to swim. But this dream seemed unattainable: He always had to remove his hearing aid in the water because it wasn’t waterproof and there is no suitable protection for it in Georgia. Without being able to understand his swimming instructor, he couldn’t attend lessons. The family lived very modestly. Moreover, the boy’s hearing aid was old and inadequate. A modern device or even special protection were unaffordable for them, as orders from abroad are almost impossible to pay for in Georgia due to the weak currency. A Difficult Start in Life The boy’s hearing impairment was the result of a cytomegalovirus infection (CMV) that his mother had contracted during pregnancy. At that time, knowledge about the dangers of this disease was lacking in Georgia – and a medical error was also a factor: The attending gynaecologist failed to examine the mother sufficiently and overlooked the infection. It wasn’t until he was two and a half years old that the mother noticed that her son could not hear. Both ears were affected – the left ear was hard of hearing to the third degree; the right ear was almost deaf to the fourth degree. The child’s development was severely limited as a result. He began to speak very late. A cochlear implant would have improved his situation, but the costs were prohibitive for the family. Only thanks to a donation from an organization did the cochlear implant operation finally become possible. But even afterwards, the situation remained difficult: After implantation, regular adjustments and hearing therapy are necessary – regularly for the first twelve months. The family had to travel to the capital, Tbilisi, repeatedly, which placed enormous financial strains. Help from the Lehnhardt Foundation When I heard about all this, I didn’t want to stand idly by. I contacted a clinic that put me in touch with the Lehnhardt Foundation. There, I spoke with Dr. Monika Lehnhardt-Goriany – and immediately found someone who listened. Thanks to the Foundation’s generous support, the boy not only received the Aqua Kit (waterproof protective covers for his cochlear implant), but also a refurbished speech processor, a later generation than what he had, and accessories.. This was an unimaginable gift for the family. A Special Visit In the summer of 2025, my husband, our children, and I travelled to Georgia to visit family and friends. We took the opportunity to meet this family personally and deliver the Foundation’s donations. We met them in their small family home, where they welcomed us with a warmth that deeply moved me. Although they live in very modest circumstances, they had prepared a table of traditional Georgian dishes in our honour – a touching token of their gratitude. When we handed the donations to the boy, he beamed from ear to ear. Finally, he could look forward to fulfilling his long-held dream: to learn to swim – and, thanks to the new protection, to also understand his teacher. The mother told us her whole story again and repeatedly emphasized how infinitely grateful she was to Dr. Monika Lehnhardt-Goriany and the Foundation. A life full of new possibilities For this boy, the support means far more than just a new hearing aid. It gives him quality of life, new perspectives – and the feeling of not being forgotten. For me personally, it was one of the most moving encounters of my life. And I am full of gratitude that there are organizations like the Lehnhardt Foundation that give hope to families in seemingly hopeless situations. Maka Shekeladze RELATED CONGRESS – Webinar – Evaluating the impact of peripatetic Teachers of the Deaf on deaf children’s outcomes – 17 September 2025
Book your place via this Eventbrite link Join Dr Emmanouela Terlektsi, Associate Professor in Deaf Education, and Angie Wootten, Teaching Fellow in Education from the University of Birmingham, alongside Fiona Patterson, lead ToD and Corrina Burge, ToD, from the Sandwell Sensory Support Team, as they share their research. Funded by the National Deaf Children’s Society, practitioners from Sandwell Local Authority worked collaboratively with the researchers, from planning and implementation through to analysis and reporting, to examine the impact on outcomes as perceived by ToDs, parents, deaf young people and collaborating professionals, and as measured by standardised language and literacy assessments, along with other evaluation tools. The event will provide an opportunity to learn more about the study from the researchers and the ToDs involved. It is open to anyone who works with deaf children. The full report and a summary for parents will be on the NDCS website soon. This webinar will have British Sign Language interpretation support. Zoom captions will be used for this webinar. This event will be recorded. RELATED CONGRESS – CI ADVOCACY IN ACTION 2025, Brussels, 16 & 17 October 2025
Our second conference, CI Advocacy in Action, will address the issue of sustainable, lifelong CI services across the globe. With CI users, families, professionals, researchers and industry from across the globe, the conference will truly bring together the meeting of Science with Experience, as Astrid van Wieringen, Professor at the University of Leuven, and President of the International Society of Audiology suggests. It will be a busy two days, with such a range of interests and topics to share and an increasingly active community. Participation will be encouraged with SLIDO and our Talking Wall, but if last time was anything to go by, getting people to talk and interact will not be a problem! A number of key global collaborations emerged after our first conference – with people keen to learn from each other and not to reinvent wheels. Wonderful interactions with so many inspiring advocates – sharing ideas and challenges.. Join us this year for this unique gathering with common goals and values: all committed to a sustainable future for CI users. Go to CI ADVOCACY IN ACTION 2025: 16TH & 17TH OCTOBER 2025 – CIICA to read more and register- discount for CI users. See you there! EURO-CIU is a founding member of CIICA RELATED CONGRESS – BATOD 50th anniversary conference – 24 & 25 April 2026
Friday 24th and Saturday 25th April 2026 Arlington Centre, Mary Hare School, Arlington Manor, Snelsmore Common, Newbury, RG14 3BQ Call for contributions and conference details to follow soon RELATED CONGRESS – HeAL 2026 – Hearing Across the Lifespan – 4 to 6 June 2026
Get ready for HeAL 2026, the Biennial International Conference on Hearing Across the Lifespan—an unparalleled event bringing together global leaders, researchers, and practitioners in hearing care. For over 20 years, the HeAL Conferences have set the gold standard for advancing hearing health, spotlighting breakthroughs in diagnostics, rehabilitation, and patient empowerment. With participation from 40+ countries and over 300 presentations, HeAL fosters collaboration in an inclusive, dynamic environment. While the picturesque shores of Lake Como have been a hallmark of HeAL, the 2026 edition introduces a captivating and enchanting new destination: Padova, a city rich in history and culture, just a stone’s throw from the iconic wonders of Venice. In addition to the Scientific Program, which promises to be even more engaging and stimulating than in previous years, we are preparing a rich Social Program that will allow us to fully appreciate and experience the extraordinary wonders of this magnificent area of Veneto. The deadline for abstract submission is 31 January 2026. Please click here for submission guidelines. HeAL 2026 promises to inspire, connect, and elevate the future of hearing care. WORLD NEWS – Celebrating 90 Years of Professor Graeme Clark: A Legacy of Cochlear Implants
August marked the 90th birthday of Laureate Emeritus Professor Graeme Clark AC – the visionary behind the multi-channel cochlear implant, along with 40 years since the first child to receive a commercial multichannel cochlear implant back in 1985. The month also saw the 5,000th patient treated by the Victorian Cochlear Implant Program (Australia), and 40 years since the establishment of the world’s first public Cochlear Implant Clinic. To commemorate these milestones, the Royal Victorian Eye and Ear Hospital in Melbourne, Australia hosted a special event on August 20th, bringing together cochlear implant recipients and their families, researchers, clinicians, and colleagues from Cochlear and the University of Melbourne. The celebration honoured the transformative impact of Professor Clark’s work and the enduring legacy of cochlear implant technology. The event featured heartfelt presentations from Professor Robert Briggs, Head of the Cochlear Implant Clinic; Sean Kelleher, a cochlear implant recipient; and Professor Clark himself. Guests – including Scott Smith, who was the first child to be implanted with a commercial multichannel cochlear implant designed for children, were taken on a journey through the evolution of cochlear implants – from early prototypes to the life-changing devices used today by hundreds of thousands of people worldwide. Professor Clark’s story began with a childhood ambition: “I want to fix ears,” he told his teacher, inspired by his father’s struggle with hearing loss. That dream never faded. After becoming a doctor, Clark pursued what many deemed impossible – restoring hearing through science. His determination led to the invention of the world’s first multi-channel cochlear implant, a breakthrough that changed lives and redefined hearing care. Even on a family holiday, Clark’s mind remained focused on innovation. A seashell and a blade of grass sparked the idea that helped him navigate the cochlea – an insight that would lead to the first successful implantation in 1978. His patient, Rod Saunders, regained hearing after two years of silence, marking a turning point in medical history. More than 40 years and over 750,000 recipients of cochlear implants later, Professor Clark’s legacy continues to grow. Reflecting on his life’s work, Professor Clark shared archival footage and personal stories, highlighting the human impact of his invention. The room was filled with emotion as families and professionals celebrated not just technological progress, but the connections and possibilities it has created. Brendon Gardner, CEO of the Eye and Ear Hospital, summed up the spirit of the event: “These milestones are not just numbers or dates—they represent lives changed and the enduring power of the cochlear implant.” The celebration was a tribute to vision, perseverance, and the profound difference one idea can make. Professor Clark’s legacy continues to resonate—bringing sound, connection, and hope to generations. (With thanks to Cochlear for submitting this article and photo) WORLD NEWS – UK – AVID – How Do You Deaf?
First out of the blocks is Kerry Tidman – deaf therapist, TEDx speaker and CI-user. Kerry’s story is a testament to the power of determination. She lost her hearing aged 4, but without any support, she became increasingly isolated, blamed for never paying attention and bullied. She finally got hearing aids just before starting high school but, neglected both at home and at school, she was put into foster care before becoming a mother herself while still a teenager. Life hit rock-bottom during COVID when masks made communication almost impossible. In her book, “How Do You Deaf?”, aimed predominantly at teens and young adults, Kerry describes turning her life around. How martial arts changed her outlook. How becoming a grandmother at forty gave her the impetus to take control of her own life. How getting a cochlear implant brought immense changes: “It’s given me access to sound, yes – but more than that, it’s given me back my voice. It’s reminded me that identity isn’t about labels – it’s about wholeness.” Having trained as a therapist, Kerry now runs her own practice, has presented at TEDx, and hosts the DEAFinitely HER podcast. Her book, which takes us through her CI-journey, is part autobiography, part self-help guide, supporting readers to find their own voice, their identity and their place in the world: “I’ve always believed that our stories — especially the messy, misunderstood, and misheard parts – can become someone else’s survival guide. This project is deeply personal. It’s the book I wish I had growing up – when I felt alone, unheard, or like I had to explain myself just to exist in certain spaces. Now, I’m turning lived experience into something that can meet young people where they are – and remind them that they are not broken, too much, or behind.” “How Do You Deaf?” has already elicited its fair share of tears – sad ones, happy ones, tears of recognition and relief and letting go… This teacher says it so much better than I ever could: “This is a book I wish I had when I was younger. I read it front to back in one sitting. It was an echo of many of my own experiences and deep, hidden feelings. “My one complaint about the field of Deaf Education is that it focuses on how to self-advocate, what to say, to whom, list parts of your hearing aids, etc. While this is beneficial, professionals never seem to touch on the root of WHY we won’t advocate for ourselves. They don’t talk about the shame or the feelings plaguing us, preventing us from feeling worthy to speak up for ourselves.… “While there are phenomenal professionals out there, sometimes it takes a Deaf Mentor to really understand you and your experiences, and guide you through them. “Thank you, Kerry, for sharing, being brave and vulnerable. Sharing a piece of your heart.” If you are going to be in Brussels for the CIICA Conference later this year, I look forward to sharing Kerry’s book with you there; if not, you can find it on Amazon. This year, AVID Language has started working with several new deaf authors, who are sharing the ups and downs of their own life experience, to support and uplift others. First out of the blocks is Kerry Tidman – deaf therapist, TEDx speaker and CI-user. When I first saw her manuscript, I could tell straight away it was powerful. Reading it as the parent of a deaf child felt gut-wrenching…heart-rending… but also triumphant and joyful. I suspected Kerry’s story would resonate with many people, but I was not quite prepared for the outpouring of emotion that the book, published last month, has prompted. How Do You Deaf? is part autobiography, part self-help guide, supporting readers to find their own voice (in whichever way they choose), their identity and their place in the world. Kerry says: “I’ve always believed that our stories – especially the messy, misunderstood, and misheard parts – can become someone else’s survival guide. “This project is deeply personal. It’s the book I wish I had growing up – when I felt alone, unheard, or like I had to explain myself just to exist in certain spaces. “Now, I’m turning lived experience into something that can meet young people where they are – and remind them that they are not broken, too much, or behind.” This book for teens and young adults has already elicited its fair share of tears – sad ones, happy ones, tears of recognition and relief and letting go… This teacher says it so much better than I ever could: Deaf Mentor in a book: “This is a book I wish I had when I was younger. I read it front to back in one sitting. It was an echo of many of my own experiences and deep, hidden feelings. “Buy it. Read it. Use it. “My one complaint about the field of Deaf Education is that it focuses on how to self-advocate, what to say, to whom, list parts of your hearing aids etc. While this is beneficial, professionals never seem to touch on the root of WHY we won’t advocate for ourselves. They don’t talk about the shame or the feelings plaguing us, preventing us from feeling worthy to speak up for ourselves. “This book walks you through self-reflection in a gentle way. I love the bite size passages with journal reflection pages. It allows you space to process your own experiences. It is a wonderful tool to use with your children or students to connect and understand them. While there are PHENOMENAL professionals out there, sometimes it takes a Deaf Mentor to really understand you and your experiences, and guide you through them. “I, one hundred percent, recommend this book!! Please use it with your children and students. “Thank you, Kerry, for sharing, being brave and vulnerable. Sharing a piece of your heart.” HOW DO YOU DEAF? is the first book in Kerry’s Thriving with Hearing Loss series. It’s out now on Amazon and in other online bookstores – currently only available in English, but we hope to have other languages available soon. I am looking forward to bringing it to CIICA 2025 in Brussels later this year – see you there! Tanya Saunders AVID Language Tanya Saunders WORLD NEWS – UK – AVUK – Nominate outstanding deaf young people and adults working with them – awards deadline looming
Last year’s young winner Sanemi Parashar, aged 13, was born profoundly deaf and had cochlear implant surgery at 15 months. She was supported to learn to listen and speak as a young child with Auditory Verbal therapy on Auditory Verbal UK’s family programme. Sanemi promotes charity work at school and is an ambassador and mentor for fellow cochlear implants users, volunteers at a hospital specialist hearing implant centre and a local deaf children’s society. She is excelling at school, learning two foreign languages as well as Indian dance and is always outspoken about the impact of deafness alongside challenging perceptions of what deaf young people can achieve. Adult joint winners were: Susan Brownson was Deputy Headteacher and Lead of Deaf Provision at Laycock School in London described as “a visionary leader at the heart and soul” of the provision in London. Her unwavering commitment to inclusion has not only transformed the lives of the children she works with but has also set a benchmark for educational institutions nationwide. She believes deeply in supporting deaf children, ensuring they are equipped with the skills, confidence, and self-belief to reach their full potential. And she consistently challenges and changes perceptions about what deaf children can achieve. Tricia Kemp is the parent of one of the very first British children to receive a cochlear implant and set up the Cochlear Implanted Children’s Support Group (CICS) in 1993 to support families and children with cochlear implants around the UK with support, advice and information. Tricia champions the achievements of children with cochlear implants inspiring others to reach their potential. Parents of deaf children talk about her passion, commitment and enthusiasm alongside her personal approach, communication and support. She always thinks of others and goes above and beyond to support deaf children and their families. The deadline for entries into the 2025 awards is Friday, September 26th. WORLD NEWS – UK – AVUK – Celebrating academic achievements of deaf teenagers
Deaf teenagers continue to prove that with early and effective support, like Auditory Verbal therapy, they can thrive and have the same opportunities as their hearing peers. Auditory Verbal UK has been celebrating with young cochlear implant users who have achieved amazing exam results this summer and their next steps. You can find out more about recent achievements of deaf children with Cochlear Implants, who have had access to Auditory Verbal therapy here. Alice Campbell is heading to Edinburgh University in Scotland later this month to study Philosophy and English. And Charlie Denton is off to Loughborough University to study Sports Management. WORLD NEWS – UK – BATOD publications: ‘Articulating the specialism’ series
In July 2025, informed by past BATOD articles and experiences of current QToDs in further education, BATOD published a new document ‘Articulating the specialism – the role of the QToD in FE ‘. The previous publications have also been revised:
Watch this space for new addition to the series: The role of the QToD in Cochlear implant centres. Revised PUD publication. BATOD is pleased to be the host platform for the revised Personal Understanding of Deafness (PUD) resource, A specialised curriculum for deaf children to promote independence and self-confidence – Dr Jackie Salter, Caroline Chettleburgh and Susan Winn. “The Personal Understanding of Deafness (PUD) programme was developed to address the specific social, communication confidence and self-esteem needs of children who are deaf and has been used effectively by many Teachers of the Deaf.” The PUD programme consists of 5 strands, each of which consists of a set of progressive learning objectives
N.B. Issues of safety particular to deafness are embedded throughout the strands. The programme objectives are designed to be used in a flexible manner so could be delivered:
Also BATOD recently revised two publications in the open-access MESHGuides Deaf Education series
WORLD NEWS – USA – ACI Alliance update
Conference Dates: Wednesday, May 6 – Saturday, May 9, 2026
Join ACI Alliance members, colleagues and industry partners at the Hyatt Regency Chicago Hotel for the CI2026 Conference on Cochlear Implants. Room Block Rates starting at $289 plus tax. The cut-off date to receive the special group rate is April 13, 2026. CI2026 Chicago – American Cochlear Implant Alliance Special Interest Groups (SIG) One of the most significant aspects of our organizational growth is the member-driven push to establish and own special interest groups or SIGs, allowing members to meet together to explore and take action on important issues. These groups now number five, with three SIGs meeting virtually throughout the year and in-person at the annual conference. Expanding our focus beyond a simple definition of access to cochlear implantation is an important aspect of the organization’s current set of activities. Indeed, these five SIGs demonstrate how ACI Alliance can engage with a broader group of individuals and organizations who can help all of us expand knowledge of, and support for, cochlear implant access.
All of these SIGs will be available for attendees during CI2026 Chicago: Special Interest Groups – American Cochlear Implant Alliance Cochlear Implant Connections for Teens Back to School Webinar: Talking to Teachers About Hearing Loss In case you missed Lexi’s Back to School Webinar: Talking to Teachers About Hearing Loss, you can view the recorded webinar and download a copy of her presentation. Be on the lookout for her next webinar to take place in early November. Sign-ups coming soon! Cochlear Implant Connections for Teens – CI Resources for Teens – ACI Alliance Individual Education Plan | FAQs and More An IEP for a student who is hard of hearing addresses their individual communication and learning needs. The team takes into account the student’s language and communication style, social-emotional development, academic performance, and overall support needs. Based on this, the IEP outlines personalized goals, services, and supports—such as hearing technology or strategic classroom seating—to ensure the student has equal access to learning in the least restrictive environment. Read more about this and FAQ on our page: IEP (Individualized Education Plan) FAQs – American Cochlear Implant Alliance ADVANCED BIONICS – Remote Programming – Virtual CI Appointments via Smartphone
Visiting your audiologist can sometimes be a challenge, whether due to transportation issues or a busy schedule. To make your life easier, our AB Remote Support app allows you to have virtual appointments with your audiologist right from your smartphone. The app has a video chat function that enables you and your audiologist to meet over secure connections with end-to-end encryption. It even lets your audiologist remotely adjust your Marvel CI sound processor and compatible Phonak Link hearing aid or CROS – all without you having to go to the clinic. The AB Remote Support app is free to download for both iOS and Android devices. Visit AdvancedBionics.com/remote to learn more. If you require more information about the app, please contact your hearing care professional or local AB support. Apple, the Apple logo, iPhone, and iOS are trademarks for Apple Inc., registered in the US and other countries. App Store is a service mark of Apple Inc. ADVANCED BIONICS – My Journey from Hearing Aids to Cochlear Implants
“After an in-person visit, I felt the settings weren’t quite right, so I texted my audiologist, and we did a remote adjustment. It was very easy and worked just as well as an in-person visit,” she says. With the ability to connect with her audiologist from home, Sue received timely adjustments and support tailored to her needs, all while managing her busy lifestyle. Read more about Sue’s journey and how Remote Programming can make a difference in your hearing care. Hearing Aids to Cochlear Implants – Sue Prichard’s Story | Advanced Bionics Remote Programming is a part of Advanced DigiCare, a full set of digital solutions designed to support every step of your hearing journey. Discover other Advanced DigiCare tools for you and your family here. COCHLEAR – Improving care for severe to profound hearing loss through establishing standard of care for cochlear implants
To rectify this and establish a new standard of care, a global task force of 52 experts including CI users came together to develop the Living Guidelines for Cochlear Implantation (8), (9). These guidelines are continuously updated to reflect new evidence as it is published —and aim to standardize care across the entire patient journey: from screening to evaluation of outcomes. A core pillar of the living guidelines is the candidacy definition, stating that patients should be referred for a CI evaluation based on a 60/60 criteria, i.e. if they demonstrate a best ear unaided monosyllabic word score less than or equal to 60% correct and an unaided pure-tone average that is greater than or equal to 60 dB HL (10). It is encouraging to see that the living guidelines are now being implemented in several countries across the globe. One good example of national-level implementation comes from Italy, where awareness remains a major barrier, despite good coverage by the health care system. The Italian guidelines were published in 2024 (11), and emphasize individualized assessment and evidence-based decision-making, particularly around candidacy. As a complement to the guidelines, educational courses and distance learning tools to ENT specialists and audiologists were provided. It is envisaged that over time these guidelines will support improved access to CI in Italy. At a global level, the endorsement of the living guidelines by the International Federation of Otorhinolaryngological Societiesv (IFOS) provides an opportunity to raise awareness and encourage referrals among their 60,000 ENTs across the globe. The integration of global and national guidelines aim to provide consistency, support professional education, and enhance patient outcomes. The Living Guidelines offer a framework for equitable access to hearing healthcare, helping bridge gaps in treatment and improving quality of life for individuals with severe to profound hearing loss. The uptake is increasing globally, which is encouraging as this will improve patient access and care and reduce the impact of severe to profound hearing loss on an individual and societal level. More information on the guidelines and some of the initiatives to implement them can be found at adulthearing.com. References (1) Loughrey et al. (2018). Hearing loss and cognitive decline. JAMA Otolaryngol. MED-EL – Spotlight on Hearing Health: MED-EL at EXPO 2025 Osaka
At EXPO 2025 in Osaka, hearing health took centre stage at the Austrian Pavilion, where MED-EL hosted a compelling event that brought together science, policy, and music. As part of Austria’s theme “Composing the Future,” the event was another step in MED-EL’s ongoing commitment to improving hearing care worldwide. The program featured a keynote by Dr. Ingeborg Hochmair, CEO and co-founder of MED-EL, who spoke about the transformative impact of hearing technology on communication and quality of life. ENT expert Prof. Koichi Omori (Kyoto University) addressed Japan’s unique demographic and healthcare challenges, while Prof. Shin-ichi Usami (Shinshu University) shared insights into the future of hearing implant technology. Dr. Patrick D’Haese, MED-EL’s Corporate Director of Awareness and Public Affairs, provided a European perspective on successful strategies for awareness and access. The event marked a key moment in raising awareness for hearing health in Japan and beyond. As EXPO 2025 continues under the theme “Designing Future Society for Our Lives,” MED-EL’s presence underscores how innovation, advocacy, and human stories can shape a more inclusive future. Learn more about MED-EL’s hearing solutions and Austria’s EXPO presence. Silke Artner MED-EL – Music as a Symbol of Inclusion
The event drew media attention and marked a pivotal step toward advancing public understanding and advocating for Japan’s national hearing health policy. As the EXPO continues to spotlight purpose-driven innovation, MED-EL’s participation exemplifies how technological leadership and policy advocacy can advance a more inclusive global society. For more information, visit the Austrian EXPO website and learn more about MED-EL’s hearing solutions. MED-EL – 10 Years of Hearpeers: The Anniversary Concert
Hearpeers is MED-EL’s global Mentor project that connects hearing implant users with candidates to support them on their hearing journey. This initiative was first launched in the UK in 2015, with just a small group of dedicated Hearpeers Mentors participating. Over the last decade, the project has grown far beyond that, welcoming volunteers from all over the world who are united by their motivation to support others. Hearpeers has become a global network, with over 190 Mentors from 42 countries. To mark ten years of Hearpeers, MED-EL invited ten Hearpeers Mentors from all over the world to visit MED-EL HQ in Innsbruck, Austria, for a special anniversary concert on 24th September. In the city where their implants were developed and built, Mentors will perform music—from pop to folk—showcasing the power hearing implants and music have in connecting people. With more than 200 audience members expected to attend, the event will raise awareness of Hearpeers and the life-changing potential of hearing implants. Follow @hearpeers on social media to catch all the highlights from this event and more celebrations to close out the anniversary year. |
|
| EURO-CIU · 166, rue de Beggen, L-1220 Luxembourg · [email protected] | |
Dear readers,
Well, it’s now Autumn – so I hope that you’ve all had a good summer!
Last Saturday, the Extraordinary General Assembly of EURO-CIU was held online. Over the course of four and a half hours, a total of 21 participants from 11 different countries took part.
(Photo of Tobias Fischer by Sven Brauers)
(Photo of Tobias Fischer by Sven Brauers)
CI expert centre ONICI and University College Artevelde (Belgium) are developing an international postgraduate program on education, counselling and rehabilitation of people with hearing loss (children, adults and elderly) – and we’d love to hear your thoughts.
“It’s never too late for better hearing!” Joey Carlsson, Canada
This year’s Cochlea Implantat Austria (CIA) Summer Days in Carinthia, Austria, welcomed a record number of new participants. Over five sunny days, the 37 families combined learning, sharing experiences, and simply enjoying time together. And while much of Austria was caught in rain, Velden offered sunshine and even swimming fun!
In recent years, school curricula in Austria have undergone several updates. Last year, Austrian Sign Language was added as a possible second foreign language in secondary schools, also for normal hearing pupils. A new curriculum supplement has now been enacted for students aged 6 to 15 with hearing or communication difficulties. This supplement aims to ensure equal participation in the regular school system and has been in effect since the beginning of the school year in September 2025. The goal is not only to provide barrier-free knowledge transfer, but also to strengthen the self-confidence, identity, and social participation of the affected students.
Tuesday, September 2nd, was a day filled with pride, gratitude, and inspiration. With over 50 participants, we celebrated a special achievement: in barely ten years, the OPCI Foundation has organized no fewer than 200 living room meetings throughout the Netherlands. This means that over the years, we’ve had the pleasure of meeting more than 2,000 (prospective) CI recipients – often literally in people’s homes, in warm living rooms that, for a single day, became the scene of recognition, hope, and connection.
A Peer-Led Journey of Hope for New Families and the CI Community
Photos from top-left clockwise: Anna in the arms of expert audiologist Orhan Efe Güven and mother Tatjana; Anna and her mother with Aylin Özgür; Post-surgery hospital visit with Betül Mutluç (Vice President of the Cochlear Implant Association – CIU) and Hatice Karataş (CIU); and together with Aylin Özgür, President of the Türkiye Cochlear Implant Association and 1st Vice President of EURO-CIU, Prof. Dr. Gonca Sennaroğlu, and the Cochlear Implant Association (CID) cochlear implant user management and project team.
Photo: Maka Shekeladze on the right, with the little boy and his mother
BATOD is pleased to host this webinar on 17th September 4pm – 5pm
WHERE SCIENCE MEETS EXPERIENCE!
Save the date:
Photo: Graeme & Margaret Clark
This year, AVID Language has started working with several new deaf authors, who share the ups and downs of their own life experience, to support and uplift others.
For the third year Auditory Verbal UK is recognising the outstanding achievements of deaf children and young people, and the adults who have gone above and beyond to support them. The annual Outstanding Achievement Award in memory of Claire Campbell, a mother of two deaf children who wear cochlear implants and a committed volunteer and ambassador of charity Auditory Verbal UK up until her death in November 2022, are open for entries now.
Photo: Alice Campbell and Charlie Denton
BATOD has added a new publication to the series.
CI2026 Chicago | Upcoming Dates
Advanced Bionics is an industry leader with cochlear implant apps, online tools, and resources to support you and your family. Meeting you where you are, AB’s Advanced DigiCare offers digital solutions for the entire hearing journey, including the industry’s only complete CI Remote Programming.
Transitioning from hearing aids to cochlear implants, AB recipient Sue Prichard discovered how the AB Remote Support app could transform her audiology appointments.
Hearing loss causes significant impact on the quality of life among those affected contributing to social isolation, cognitive decline, and is increasingly linked to dementia (1), (2). On a societal level, it impacts productivity, healthcare and social well-being, and is estimated to cost the global economy $750–790 billion annually (3). In patients with severe to profound hearing loss the health impact is significantly increased, making it a concern that cochlear implants (CI) remain under-utilized despite their effectiveness with fewer than 1 in 10 eligible individuals receiving them (4), (5). Barriers include lack of awareness among healthcare professionals and patients, socioeconomic factors, and absence of standardized referral pathways (6), (7).
Photo: Shaping the Future of Hearing: Prof. Usami, Dr. Ingeborg Hochmair, and Prof. Omori share visionary insights
A powerful event highlight was a live performance by cochlear implant users: artist Dizzy Yoshimoto and the band BambooLily. Their performance demonstrated how hearing technology enables creativity, inclusion, and full participation in society. Their performance was more than entertainment – it was a powerful reminder of what is possible when barriers to hearing are removed.
Hearpeers’ celebrates its 10th anniversary with the Hearpeers Anniversary Concert on 24th September!| © EURO-CIU (2025)
Subscribe to this free newsletter |
|
