Tag Archive for: Stichting Ushersyndroom

A decade of impact at Stichting Ushersyndroom

On January 9, 2025, Ivonne Bressers (59) officially stepped down as chairperson of Stichting Ushersyndroom. During her search for appropriate care, she discovered how limited and inaccessible the available information about Usher syndrome was. Driven to change this, she and others formed a campaign team and thus laid the foundation for Stichting Ushersyndroom.

“From the very first moment I had a clear vision in mind: Not ‘deafblindness’ but Usher Syndrome is our common denominator. ”

With her unique, creative approach and inspired by the stories of others, she has built a foundation that she can be proud of. “We put people first, paying attention to the dreams, the challenges and sometimes the sadness that this diagnosis entails. Life with Usher Syndrome is about more than hearing and sight loss. It is about lifelong coping, adaptation, resilience and hope. “

The past ten years have been a journey of building, of connecting, and of bringing hope to all those living with Usher syndrome and to their loved ones.

“When I started in 2014 with a small, enthusiastic team, there was hardly any basis. There was no community, little information, no structural funding and a lot of fragmentation. Nevertheless, we felt a common mission: not only to create awareness for Usher Syndrome, but also to build a strong, close-knit community and stimulate scientific research. “

Being heard with little hearing
It became increasingly clear to Ivonne that people with Usher Syndrome have a unique need for care, as this disability is a combination of hearing and vision problems, while care is often focused on only one of the two. Ivonne conducted an exploratory study into the difficulties of hearing aid fitting for people with Usher Syndrome, speaking to fellow sufferers, hearing care professionals, audiologists and hearing aid manufacturers (only in Dutch: Extremely soft yet incredibly close)
The result was a new guideline for hearing aid fitting. Later, Ivonne advocated for a 2nd cochlear implant for people with Usher Syndrome to be able to hear direction. As of 2017, it is now possible for adults with severe hearing and vision loss to qualify for a 2nd CI.

Key role from a patient perspective
In addition to the hearing and sight loss, Ivonne experienced more health problems that were frequently recognized within the community. The chronic fatigue that was usually attributed to the high effort of hearing and seeing. Ivonne: “I found it too easy to blame the fatigue problems all on the limits. I saw more of a connection between the biological internal clock and fatigue.”

Ivonne discussed this with researchers and doctors at Radboudumc, which resulted in a new scientific study: Sleep problems may not be a result of the limitations in hearing and vision, but an essential part. Recently, an important news about this research was published (https://onlinelibrary.wiley.com/doi/10.1111/jsr.14456)

From a patient perspective, Ivonne played an important key role in these studies.

10 years ago, new possibilities were discovered in medical science for a treatment of Usher Syndrome. Ronald Pennings wanted to accelerate and further develop these developments, but this required a lot of funding. He hoped to be able to collect the necessary resources together with the patients, which further strengthened the collaboration between researchers and the patients.

A decade of growth and impact
With the establishment of Stichting Ushersyndroom nd the campaigns that have been set up, Ivonne has achieved a great deal. “I am extremely proud of what we have achieved together. We have supported 18 scientific studies, raised more than €2,75 million and set up a multidisciplinary care team that enjoys national recognition. In addition, we have created a close-knit community that supports patients and their families. Our knowledge portal and patient brochure are used worldwide as inspiration. And with our first moonshot—”In 2025 Usher Syndrome will be treatable”—we have taken important steps towards treatments that can slow down or stop the progression.”

A royal honour and a great pillar of support
In 2022, Ivonne was appointed Knight in the Order of Orange-Nassau by the king, a special recognition that she dedicates to everyone who has supported her during this journey. Her family plays a major role in this. Her daughters and their partners, as well as her own partner Henk, have been her inexhaustible support and anchor all these years. “Not only have they encouraged me through thick and thin, but they have also provided countless hours of volunteer work at the foundation. Without their love, humor and patience, I could not have done this work.”

After ten years in which I have devoted myself with heart and soul, creativity and a good dose of obstinacy to Stichting Ushersyndroom, the time has come to hand over the baton.

One last step: USH2025
Although she has resigned from her role as chair, she remains actively involved as a volunteer in the project management of the International Symposium on Usher Syndrome, USH2025. This symposium, which is organized in the Netherlands, brings together patients, researchers and healthcare professionals from all over the world. It offers a wonderful opportunity to share knowledge, to strengthen collaborations and to further shape the second moonshot, “In 2030 Usher Syndrome will be known worldwide and diagnosis, treatment and care will have become standard”. The symposium covers all facets of the foundation: scientific cross-pollination, fundraising, media attention and strengthening national and international networks. For Ivonne, who has taken the organization of the symposium to the Netherlands, USH2025 is the icing on the cake.

Gratitude and trust
“Saying goodbye is not easy. The connection with my colleagues, volunteers and the community will always hold a special place in my heart. But I hand over the baton with confidence, knowing that the foundation is stronger than ever.

I am grateful for the support I have experienced, but most of all for the beautiful and inspiring conversations and encounters with fellow sufferers, people within the foundation’s network, volunteers, researchers and specialists, who work tirelessly for support and guidance.

I invite everyone to attend USH2025. As I often say: if you doubt the hope that exists, come to the symposium. You will look at the future differently.

With pride, gratitude and a warm heart, I look forward to what is to come. Thank you for everything we have achieved together and for the support I have experienced in these years.”

– Ivonne Bressers, January 2025 –

On behalf of the entire USH community, we express our deepest gratitude to Ivonne for a decade of building, connecting and, above all, offering hope for the future. A future without boundaries, without disabilities and without Usher Syndrome.

Read here the message from the Supervisory Board

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#USH2025: International Symposium on Usher Syndrome 

LEES ARTIKEL IN NEDERLANDS

After a long breadue to the COVID-19 pandemic since the 2018 Usher Conference in Mainz, we are excited to announce that the 5th International Symposium on Usher Syndrome, USH2025, will take place on June 19, 20, and 21, 2025, in Nijmegen, the Netherlands. This groundbreaking event, organized by Stichting Ushersyndroom in collaboration with Usher Syndrome Coalition (US) and various international patient organizations, promises to be an unforgettable experience.

A collaboration of global excellence
For the organization of USH2025, we have joined forces with a group of leading scientists from Radboudumc in Nijmegen Boston Children’s Hospital and Louisiana State University School of Medicine.  Together, they form the Scientific Committee. This unique collaboration allows us to share the latest scientific insights and innovations with each other and the USH community.
The Scientific Committee is in the process of assembling an impressive list of speakers for both the two-day scientific congress and the Congrestival/Patient Day on Saturday, including leading experts from around the world. This list will be further expanded in the coming months.

A symposium for everyone
The scientific congress on Thursday and Friday focuses on knowledge sharing, interaction, and networking. During these days, scientists, medical professionals and interested parties will come together to discuss the latest developments and findings.

Stichting Ushersyndroom formulated its Moonshot in 2023: “By 2030, the Netherlands (and the whole world) will be familiar with Usher syndrome, and its diagnosis, care, and treatment will have become standard.” With USH2025, the foundation aims to take new steps toward achieving this goal. All scientists coming to Nijmegen to share their knowledge and experiences with each other and with the USH community will share with us how their contributions will help realize the Moonshot 2030.
On Saturday, the USH2025 Congrestival will follow, where the highlights of the first two days will be shared with the broader Usher community in an accessible and inspiring way.

“Ten years ago, at the start of Stichting Ushersyndroom, our dream was to build an Usher community, raise funds for research, and develop a Knowledge Platform. Together with the USH community, doctors, and researchers from Radboudumc, we have been able to realize this. That we are now organizing the International USH2025 symposium in the Netherlands as Stichting Ushersyndroom feels like a huge recognition and the icing on the cake!”
Ivonne Bressers, Chair of Stichting Ushersyndroom

The USH2025 Congrestival: a festival of the senses!
On Saturday, June 21, 2025, the eventlocation in Nijmegen will be transformed into a sensory festival ground. The USH2025 Congrestival offers a platform where science, art, music, and stories come together. This day is designed to bridge the gap between people with Usher syndrome, their families, and scientists by providing everyone with an equal and inclusive experience.

With USH2025, the organization aims to emphasize the possibilities and positive aspects of living with Usher syndrome. We want to create an inspiring environment where everyone feels welcome and where equal experiences can be shared. We are goingoff the beaten track and opt for a non-traditional program setup. We believe that the name ‘congrestival,’ a combination of congress and festival,  is all-encompassing.
Everyone will be able to experience science, art, music, and stories with all their senses.

Location and accessibility
USH2025 will take place at the modern Van der Valk hotel-conference center in Nijmegen-Lent, directly next to the Nijmegen-Lent train station. The symposium is fully accessible to everyone, with inclusive facilities and innovative support for people with auditory and visual impairments, as well as for non-native speakers.

Join us and contribute
Registration for USH2025 opens on November 1, 2024.

For all inquiries about USH2025, please contact us at info@ush2025.org.
Would you like to contribute as a volunteer, sponsor, or donor? Visit our website for more information.