Usher Network Pre-conference, Gold Coast 2019
The Usher Network is celebrating the end of yet another successful DbI Usher Network Pre-conference! Our event was held on the Gold Coast in Australia on 11th and 12th August 2019. Over 60 people attended from many different countries including USA, Canada, Holland, France, Italy, Spain, the UK, New Zealand as well as our host country Australia.
All plenary topics focused on Usher syndrome including those from a medical, personal and community perspective. The first day consisted of morning presentations with a medical view from Dr. Tina Lamey, Senior Research Scientist at Sir Charles Gairdner Hospital an associate investigator for the Australian Inherited Retinal Disease Registry and DNA Bank talking about the importance of engaging with Genetic Services in order to create a personalised approach to medicine trials and treatments.
This was followed by Associate Professor Dr. John Grigg, Head of the Discipline of Ophthalmology at The University of Sydney’s Save Sight Institute. He spoke about his approach to his patients when he consults at Sydney Eye Hospital and The Children’s Hospital, Westmead and the importance of engaging with medical professionals, markers in clinical trials and why it is important to have regular eye checkups.
After the morning break (and a chance to network) we heard from the side of family members and the Usher Network committee’s very own Emily Shepard, UsherKids Australia talked about her story and why she set up the amazing organisation she now runs with Hollie Feller. We heard from Chloe Joyner (via video teleconference) talking about Usher Kids UK.
Then Dr Nicole Lo-A-Njoe-Kort from the Netherlands blew everyone away with her lived experience and her rise to become a doctor. We then heard from Dr Moa Wahlqvist, Örebro University, Sweden who talked about the Audiological Research about Usher syndrome and biopsychosocial health that has been conducted for the last ten years with some fascinating results.
Christopher Woodfill from the Helen Keller National Centre explained the five pillars of well-being for the Deafblind community as being education, employment, lifestyle, recreation and healthcare. All of these five pillars work in unison to ensure that the DeafBlind individual is a well-rounded person with dignity and meaning – it was a great holistic approach to wellbeing and beautifully explained. This was just the first day!
The second day saw Dr Raymond Wong, Centre for Eye Research Australia explain cell reprogramming and stem cell technologies to study and treat retinal diseases and how far they have come at the Centre for Eye Research Australia with special thanks to Hollie Feller and Genetic Cures Australia.
Next, Alana Roy and Dr Annmaree Watharow talked about best practice in including those with Usher in research and then Alana ran what had to be the highlight of the UNPC – a panel focusing on mental health. All of the contributors (plenary speakers Annmaree, Christopher, Nicole and a shining star from the audience Eliza McEwin) talked about their strategies for maintaining good mental health including what to do if you have a DBBD (Deafblind Bad Day!). Hollie Feller followed this with her presentation as co-founder of UsherKids Australia and how and why she set up Genetic Cures Australia. Such an inspiring parent.
Last but not least we had the poignant Jennifer Weir just “Getting on With Life” unknowingly having Usher that she was finally diagnosed in her early sixties. Jennifer discussed her experiences working in the health industry, with a vision and hearing impairment, for over 40 years as both a Critical Care nurse and After-Hours Nurse Manager.
As always with the UNPC there were many different methods of communication taking place. We were very lucky to receive a grant to support the communication needs of everyone with the provision of interpreters and palantypists to assist in making sure we were fully accessible so special thanks must go to the Australian Governments National Disability Conference Initiative 2018-19.
We had delicious refreshments and lunch both days – which was the perfect recipe for excellent networking and getting to know one another a little better!
You can read the speaker’s PowerPoints or written submissions by clicking on the DbI links [watch this space]. More details will be followed on the DbI Usher Network webpage soon http://usher.deafblindinternational.org/ and there are lots of photos on DbI social media.
If you are interested to find out more about becoming a new member, please do contact firstname.lastname@example.org
We are looking for new committee members to get involved and increase the profile of the DbI Usher
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. 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-Pedersenfrom 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.
The Usher Network pre-conference was organised by the Network consisting of Emma Boswell, Chair of the Usher Network currently working at Sense UK, Karen Wickham Senses Australia, Bettina Kastrup-Pedersen, Center for Deafblindness and Hearing Loss, Denmark, Nadja Hogner, Department for Rehabilitation/Counselling/Deafblind, Germany, Constance Watters-Miles, Research Assistant, USA and Tatinia Bagdassaryan, A deafblind activist, Russia and hosted by Emma Boswell.
To follow each speaker's presentation, please click on the links below:
- "The impact of Usher's on psychosocial wellbeing: A personal and research perspective" Gavin Dean – UK
- "Update on Usher syndrome Medical Research" Professor Andrew Webster - UK
- "New treatments on the horizon for Usher syndrome" Dr. Mariya Moosajee – UK
- Family – Living with Usher in the Panel. DbI Usher Network Committee members.
- “Adapted Physical Activity: from idea to reality” Mads Kopperholdt and Anders Martin Rundh – Denmark
- "Good practice approaches for research and consultation processes for people with Usher Syndrome" Alana Roy - Australia
- "Delay in diagnosing Usher syndrome and atypical familial cases.” Professor Lisbeth Tranebjærg, Clinical Genetics – Denmark
- "How we give skills to Usher children to grow into assertive and confident adults" Bettina Kastrup - Denmark
- "People with Usher syndrome in Russia" Tatiana Wnukewicz-Bagdasaryan - Russia
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.