update october 2021: research into the experiences of parents of children/young people with usher syndrome
virtual family calls programme 2021/2022
3rd Thurs each month, 20:00-21:00 UK GMT
We know that connections with other Usher families are vital to help find answers to questions and build confidence in the path ahead.
Every month family members of children and young people living with Usher syndrome are invited to join our informal zoom call to discuss anything/everything Usher-related!
We host speakers and share resources on specific topics, as well as offering informal sessions in which you can chat about the things most relevant to you and your family. You are welcome to ask questions, share experiences or simply listen to others in this supportive community of parents/family members.
To register for these calls please email info@usherkidsuk.com
Every month family members of children and young people living with Usher syndrome are invited to join our informal zoom call to discuss anything/everything Usher-related!
We host speakers and share resources on specific topics, as well as offering informal sessions in which you can chat about the things most relevant to you and your family. You are welcome to ask questions, share experiences or simply listen to others in this supportive community of parents/family members.
To register for these calls please email info@usherkidsuk.com
monday 10TH - Sunday 16th MAy 2021
virtual ush connections conference
Opportunities for parents and children to connect
The annual Usher Syndrome Coalition conference is virtual once again, giving us the chance to join in with all the sessions from the comfort of our homes!
We are working with Ava's Voice and Usher Kids Australia to make sure families around the world can connect. A parent session hosted by Usher Kids UK will take place on Wed 12th May, 7.30-9pm (UK time), along with the following opportunities for children with Usher syndrome to have fun and make friendships with their Usher peers (shown in UK times):
USHkids (7-11 yrs): Saturday 15th May 4 - 5pm
USHyouth (12-17 yrs): Saturday 15th May 7.30 - 9pm
USHlittles (0-6 yrs + parents): Sunday 16th May 4 - 5pm
Register now to book a place for you and your family, so that you can access these sessions along with the full conference content. If you have any questions, just get in touch
We are working with Ava's Voice and Usher Kids Australia to make sure families around the world can connect. A parent session hosted by Usher Kids UK will take place on Wed 12th May, 7.30-9pm (UK time), along with the following opportunities for children with Usher syndrome to have fun and make friendships with their Usher peers (shown in UK times):
USHkids (7-11 yrs): Saturday 15th May 4 - 5pm
USHyouth (12-17 yrs): Saturday 15th May 7.30 - 9pm
USHlittles (0-6 yrs + parents): Sunday 16th May 4 - 5pm
Register now to book a place for you and your family, so that you can access these sessions along with the full conference content. If you have any questions, just get in touch
WEDNESDAY 24TH march 2021 (19:30-21:00 UK GMT) - VIRTUAL GET-TOGETHER FOR PARENTS/CARERS
topic: research into usher syndrome
Many families are keen to hear about progress towards treatments for Usher syndrome, and we are happy to host a number of experts who will give information about their current research programmes. Please bring along all your questions, big or small, our experts will be happy to answer them all!
Register here for your free place
For this call on Wed 24th March (19:30 - 21:00 UK GMT) will be joined by;
• Mariya Moosajee, Professor of Molecular Ophthalmology, UCL/Moorfields Eye Hospital/Gt. Ormond Street/Francis Crick Institute
https://www.crick.ac.uk/research/find-a-researcher/mariya-moosajee
• ProQR (biotech company, based in Netherlands) who will give an overview of their Usher 2A programme (https://www.proqr.com/QR-421a-for-USH2A-RP)
• Retina UK will be represented by Kate Arkell, Research Development Manager, who will discuss their portfolio of projects (www.retinauk.org.uk)
• Stephen White, who has recently joined CUREUsher as a Trustee, will provide an update on their research portfolio (www.cureusher.org)
Register here for your free place
For this call on Wed 24th March (19:30 - 21:00 UK GMT) will be joined by;
• Mariya Moosajee, Professor of Molecular Ophthalmology, UCL/Moorfields Eye Hospital/Gt. Ormond Street/Francis Crick Institute
https://www.crick.ac.uk/research/find-a-researcher/mariya-moosajee
• ProQR (biotech company, based in Netherlands) who will give an overview of their Usher 2A programme (https://www.proqr.com/QR-421a-for-USH2A-RP)
• Retina UK will be represented by Kate Arkell, Research Development Manager, who will discuss their portfolio of projects (www.retinauk.org.uk)
• Stephen White, who has recently joined CUREUsher as a Trustee, will provide an update on their research portfolio (www.cureusher.org)
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 were 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 gave his experience and insight to offer tips and guidance, helping us support and navigate our children and families through the Usher syndrome journey.
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.
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 - joined our family call to give information and answer questions about education for children (0-18+) with Usher syndrome.
In the video below Laura shares a summary of information about the Education, Health and Care Plan (EHCP) process for children with Usher syndrome
In the video below Laura shares a summary of information about the Education, Health and Care Plan (EHCP) process for children with Usher syndrome
saturday 22nd june 2019:
connect usher, bringing together families and children to share experiences and receive tailored support and information
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.
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