DbI Usher Network Pre-conference 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. Pre-Conference Australia 2019The 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 Network. We are keen to find someone with skillsets around marketing, networking, social media, and fundraising. If this is you – get in touch!
- “Welcome to DbI Usher Pre-Conference 2019” Emma Boswell, UK
- “Usher Syndrome: Genetics, Personalised Medicine and the Australian Usher Project” Dr Tina Lamey, Australia
- “Evaluating Biomarkers in Usher Syndrome: Identifying Outcome Measures for Trials” John Grigg
- “Helping Children with Usher Syndrome Thrive” Emily Shepard, UsherKids Australia
- “Research and Patient Collaboration” Dr Nicole Lo-A-Njoe-Kort, The Netherlands
- “The Importance of Interdisciplinary Studies in Health and Usher Syndrome” Dr Moa Wahlqvist, Sweden
- “The Five Pillars of Well-Being for Deafblind” Christopher Woodfill, USA
- “Better Practice in the Real World” Alana Roy, Australia
- “Helping Bridge the Gap between Children and Adults with Usher Syndrome” Hollie Feller, Australia