News
Searching for new committee members and a pre-conference ahead
We are currently looking for two new committee members to join us and work with us to take our Usher Network to the next level. We have some exciting planning ahead, which includes the Usher Network Pre-conference.
You may remember we had the Usher Network Pre-conference in Ottawa, Canada in 2023. We are excited to announce that the next DbI conference will be in Switzerland in 2027.
We are currently in motion, collaborating with other networks in our DbI world as part of preparations for our Usher Network pre-conference. If you want to find out more information about this, please get in contact. If you would like to be involved in the next pre-conference either as a speaker or in another capacity, please don’t hesitate to get in touch as we would love to hear from you.
Network activities
Usher Network Pre-conference, Switzerland, 2027
Plans are currently underway for the next DbI Usher Pre-conference for 2027, taking place in Switzerland. More information to follow so watch this space!
Usher Network Pre-conference, Ottawa, Canada, 2023
Emma Boswell provided the welcome and opening remarks to the Usher Pre-conference in 2023 in Ottowa, Canada. There were updates on what is happening with Usher research in the UK and around the world from Lyes Toualbi, and interesting talks on growing up with Usher and how identity changes over this time as Usher develops from Mattias Ehn, looking further in to supporting teenagers with Usher Syndrome with Rasmus Hougaard. Eliza shared her own personal life experience of deafblindness, serving as a positive role model to those who are deafblind and all in attendance. Dr Annmarie Watharow gave an in-depth speech about Charles Bonnet Syndrome, which she has lived experience of and within her research in working with deafblind people and those with Usher, providing lots of interesting information on this topic. A panel comprising those with Usher and those in the professional field discussed thought-provoking topics around mental health and identity and how role models play a part, as well as coping strategies people use.
Usher Network Pre-conference, Gold Coast 2019
The Usher Network celebrated the conclusion of another successful DbI Usher Network Pre-conference held on the Gold Coast in Australia on August 11th and 12th, 2019. Over 60 people attended from numerous countries including USA, Canada, Holland, France, Italy, Spain, the UK, New Zealand, and Australia. All plenary topics focused on Usher syndrome from medical, personal, and community perspectives. The first day included presentations from Dr. Tina Lamey on genetic services, and Associate Professor Dr. John Grigg on approaches to patient consultations and clinical trials. Attendees also heard personal stories from Emily Shepard of UsherKids Australia, Chloe Joyner of Usher Kids UK, and Dr. Nicole Lo-A-Njoe-Kort, sharing their experiences. Further discussions covered audiological research by Dr. Moa Wahlqvist, and the five pillars of wellbeing for the Deafblind community as explained by Christopher Woodfill. The second day featured presentations on cell reprogramming, best practices in research, and mental health strategies.
Usher Network Pre-conference, Aalborg 2017
The Usher Network pre-conference took place in Aalborg, Denmark, bringing together individuals from around the globe to share insights into Usher syndrome. Presentations covered psychosocial wellbeing, medical research, adapted physical activity, and research best practices. Speakers included Gavin Dean, Professor Andrew Webster, Dr. Mariya Moosajee, Alana Roy, Professor Lisbeth Tranebjærg, and Bettina Kastrup-Pedersen. A family panel session provided a platform for sharing experiences, and attendees explored innovative approaches to adapted physical activity.
Usher Network Pre-conference seminar in Belfast 2014
In 2014 the Usher Network Pre-conference was held on the 2nd-3rd November in Belfast, Ireland. It was a really fantastic opportunity for people working with, and from, the Usher community to get together and share best practice. We were very lucky in 2014 to have some very prominent speakers from the field of Usher syndrome and deafblindness giving presentations. There was information on new working practices, genetics and the latest treatments, information from those working with Usher-clients directly and a chance for delegates to ask questions and network with their foreign counterparts.
Usher Network activity at DbI 2013 The first Network committee meeting was held at the 8th European DbI conference in Lille, France, August 2013. The network ran a session to discuss and highlight gaps in services for Usher-people internationally and country specific. This exercise enabled us to identify problematic areas for people with Usher syndrome, professionals working with them and their families and careers. It also helped the Network to think about our focus and priorities for the pre-conference seminar planned ahead of the ABDN-conference in November 2014. It was here that an expanded committee was formed.