USH2025 is the International Symposium on Usher Syndrome, it will take place in The Netherlands, in the city of Nijmegen, on June 19th, 20th and 21st. Maybe you have already heard or read about it, it’s actually quite an unique event. The previous international symposium was in 2018 in Mainz, Germany. At that point, we had only known about the Usher diagnosis for 2 years, but when I read about this symposium, I knew I had to go. I didn’t know what to expect, I was equaIly scared and anxious to walk into that room in Mainz. But I am so happy that I did, it broadened our world and opened up a network of fellow Usher parents. The determination, passion, resilience and optimism that I witnessed in Mainz only reinforced our gut feeling: ‘life isn’t fair, but it can still be fabulous.’
I am happy to be a part of the team of volunteers involved in organising USH2025. The first two days are a scientific congress, mainly focused on scientists and researchers. Saturday June 21st is our Usher Community day, where we hope to see many of you. What can you expect that day? The morning program is basically a summary of the 2 previous scientific days, we will share with you the latest news and status of ungoing research. After lunch the choice is up to you, you can participate in several workshops, go to a panel discussion, hear a lecture, visit our USH market or ask your question at ‘meet the scientist’. Our goal is to offer you a wide and varied program, we will present the exact details and timings on the website soon.
But there is something about an event like this, that can’t be found in a program. It’s a feeling that Mark Dunning (founder or the Usher Coalition) captured beautifully during the conference in Mainz: ‘Some of you I have never met, still I feel more related to most of you in this room than to my own family.’ The power of connection, of bringing people together who share this rare condition. Knowing that you are not alone. Knowing that the mom, who traveled from the other end of the world, shares your worst fear. Hear real life Usher stories, learn from challenges that can be overcome, meet role models, gain perspective.
USH2025 is an event organized by and for the Usher community. A collaboration between international patient and parent organizations. Being a visitor in 2018, I could not foresee my involvement in USH2025, but I love to bring people together and believe in the power of this community. I hope to see some familiar faces, but also a lot of new faces on June 21st in Nijmegen. A wise Ushermom already told me in 2018; ‘It’s not always the funniest deal, except it’s got the best people.’
Please let us know if you are coming to USH2025 and register via www.ush2025.org. There is a limited amount of hotel rooms available for a special USH2025 rate, let me know if you are a interested in this. Also, we intend to offer a kids program, but this depends on the number of kids joining. It would be really helpful if you could fill out this form if you are planning on bringing your kid(s).
Thank you and hope to see you in June!
