WEDNESDAY 27TH January 2021 (7.30-9PM) - VIRTUAL GET-TOGETHER FOR PARENTS/CARERS
how to talk to your child about their diagnosis?
how to support them / their mental health as they get older / face changes?

These are some of the most challenging questions for parents of children with Usher syndrome. In this session we’ll be joined by psychologist Ian McCubbin, who supports children and families living with progressive vision loss, as part of his role based in a paediatric eye clinic. Ian will bring his experience and insight to offer tips and guidance, helping us support and navigate our children and families through the Usher syndrome journey.
Please register here to book your free place for this session
Dr Ian McCubbin is Principal Clinical Psychologist and Chartered member of the British Psychological Society. His first degree (Psychology; MA (hons)) was attained from the University of Glasgow in 2003 and he completed his Doctorate in Clinical Psychology (DClinPSych) at the University of Oxford in 2011. For the past 8 years he has been funded by the charity Fight Against Blindness (FAB) to provide psychological assessment and support to children with a visual impairment who are under the care of the Eye Hospital in Oxford.
Please register here to book your free place for this session
Dr Ian McCubbin is Principal Clinical Psychologist and Chartered member of the British Psychological Society. His first degree (Psychology; MA (hons)) was attained from the University of Glasgow in 2003 and he completed his Doctorate in Clinical Psychology (DClinPSych) at the University of Oxford in 2011. For the past 8 years he has been funded by the charity Fight Against Blindness (FAB) to provide psychological assessment and support to children with a visual impairment who are under the care of the Eye Hospital in Oxford.
WEDNESDAY 25TH NovEMBER 2020 (7.30-9PM) - VIRTUAL GET-TOGETHER FOR PARENTS/CARERS
FOCUS ON education for children/young people with usher syndrome, 0-18+yrs
MSI (multi-sensory impairment) professionals - Caireen Sutherland from RNIB and Laura Byrne from Sense - will be joining our next family Zoom call on Wednesday 25th November 2020 (7.30-9pm) to answer all your questions about education for children (0-18+) with Usher syndrome.
Please let us know your questions so that we can tailor the sessions to your needs. You can do this when you register, or via email / via our Facebook page.
Usher Kids UK calls are open to all families, regardless of the age/stage of your child(ren). If any of the teachers/support staff involved with your child would like to join this call, they are very welcome.
Please let us know your questions so that we can tailor the sessions to your needs. You can do this when you register, or via email / via our Facebook page.
Usher Kids UK calls are open to all families, regardless of the age/stage of your child(ren). If any of the teachers/support staff involved with your child would like to join this call, they are very welcome.
wednesday 30th september 2020 (7.30-8.30pm) - virtual get-together for parents/carers
focus on newly diagnosed families
This family Zoom session will focus on the needs of newly diagnosed families. If you have questions or concerns following diagnosis, or just need help to know where to turn for support and guidance, this is the place to be. Everyone - regardless of when their child was diagnosed - is welcome to join this call.
These calls - which will take place every other month throughout autumn/winter '20/'21, - give a rare opportunity to meet others who have a child with Usher syndrome, to ask questions, and share experiences and support. If you prefer you can switch off your video, mute your microphone and just listen in.
Wednesday 1st july 2020 (7.30-9pm) - virtual get-together for parents/carers
In conjunction with LOOK UK, we have organised a virtual get-together - an opportunity for all parents and carers of children with Usher syndrome to meet each other (via Zoom!), share experiences, ask questions and gather ideas about how best to support yourself and your family. Please register here for your free place. Everyone is welcome!
saturday 22nd june 2019:
connect usher, bringing together families and children to share experiences and receive tailored support and information
Registration now open! Secure your free place at this event now
For the first time, the Usher Kids UK community will have the opportunity to come together and experience a one-stop event designed to address the specific needs of families and children living with Usher syndrome. Speakers are currently being confirmed from the research sector, eye clinics, support services, education sector and more. Experts from each of these areas will be able to answer your questions and share their insight from their experience of working with children and families with Usher syndrome. Children will be able to meet others who understand their condition, and build their own network of friends they can learn from and lean on as they grow. Parents can listen to speakers and also join in with discussions to explore their needs and concerns. In doing so we will be building our own Usher family here in the UK to help connect families to the support they need.
This free event will take place in the fantastic facilities at Sense TouchBase Pears,
in Birmingham, UK, on Saturday 22nd June 2019.
Please book your place at this event now: Book your place
19-21st July 2018:
international symposium on usher syndrome and 10th annual usher connections conference
mainz, germany
JGU Mainz, Atrium Conference Center, Mainz, Germany
The International Symposium on Usher Syndrome will be held in conjunction with the 10th Annual USH Connections Conference in Mainz, Germany.
The two-day Symposium on July 19th and 20th will be a scientific forum where the world's leading experts come together in an environment that encourages collaboration and the exchange of ideas in order to advance Usher syndrome research.
The Connections Conference on July 21st is an opportunity for people living with Usher syndrome and/or their families to learn about the latest research and news, and to connect with researchers, along with meeting other Usher individuals and families. These conferences are the largest gatherings in the Usher community - if you are impacted by Usher syndrome or have any connection to the community through family, friends, or profession, we hope you will be there.
For more information, contact ush2018@usher-syndrome.org or click here
The International Symposium on Usher Syndrome will be held in conjunction with the 10th Annual USH Connections Conference in Mainz, Germany.
The two-day Symposium on July 19th and 20th will be a scientific forum where the world's leading experts come together in an environment that encourages collaboration and the exchange of ideas in order to advance Usher syndrome research.
The Connections Conference on July 21st is an opportunity for people living with Usher syndrome and/or their families to learn about the latest research and news, and to connect with researchers, along with meeting other Usher individuals and families. These conferences are the largest gatherings in the Usher community - if you are impacted by Usher syndrome or have any connection to the community through family, friends, or profession, we hope you will be there.
For more information, contact ush2018@usher-syndrome.org or click here