Activities of the Network

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.

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 Pre-conference, Aalborg 2017

The Usher Network pre-conference was held in Aalborg, Denmark. People travelled from Brazil, Australia, Canada and all over Europe to attend this unique insight into all things Usher. There were speakers from a number of countries including several with Usher syndrome. The event was opened by Gavin Dean, who has Usher syndrome type 3 and works as a Physiotherapist, he gave an overview of his MA research into “The impact of Usher's on psychosocial wellbeing: A personal and research perspective.” During his presentation he talked about Usher syndrome and its psychological effects in comparison to the general population. Gavin shared both  professional and personal experiences which only served to make his talk all the more rich. This was followed by Professor Andrew Webster from Moorfields Eye Hospital and Dr. Mariya Moosajee from Great Ormand Street Hospital, who jointly talked about the latest research into treatments for people with Usher syndrome.  We had two question and answer sessions with both specialists, which sparked some stimulating debate. After a delicious Danish lunch, we ran a family panel session led by committee member Karen Wickham from Australia. This comprised of Gavin, his partner, a mother and a daughter with Usher type 2 from Denmark and Alison Marshall from the UK, a mother of three who has Usher type 1 and it was the audience's opportunity to ask questions about the panel's experiences of having Usher syndrome and family life.  Mads Kopperholdt and Anders Martin Rundh from Denmark gave an insight into their concept of making all exercise suitable for deafblind children during their presentation entitled "Adapted Physical Activity: from idea to reality.” They then challenged the audience to test drive their very own patented light box (see pictures) and some specially adapted bikes!

The following day we the pleasure to welcome Alana Roy from Australia talking about the findings from her study on "Good practice approaches for research and consultation processes for people with Usher Syndrome" and her unique approach on research techniques involving interpreters and people with Usher attending world cafe style sessions. Professor Lisbeth Tranebjærg , from Denmark, talked about "Delay in diagnosing Usher syndrome and atypical familial cases” and the Usher network's very own Bettina Kastrup-Pedersen from Denmark talked about working with children with Usher syndrome and the fascinating work they have been doing in aiming to "How we give skills to Usher children to grow into assertive and confident adults." The final presentation was also from a network committee member, Tatiana from Russia, who gave a touching talk about her personal experience having Usher syndrome and explained about the services available in Russia to Deafblind people.

16th September is Usher Awareness Day around the world, celebrating and increasing an awareness about Usher syndrome. The pre-conference was a superb example of this as we celebrated bringing Usher people from different countries together, to share their personal experiences as well as the professionals working alongside them, demonstrating that we truly are working together as one to make the Network a great success.