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
16th september 2017:
3rd global Usher syndrome awareness day
Now in it's 3rd year, Usher Syndrome Awareness Day gives the whole Usher community a chance to come together and let the world know about Usher syndrome and the challenges faced by those living with the condition. The event is held on the autumnal equinox, which marks the start of days that contain more darkness than light. It is a powerful metaphor for the threat of Usher syndrome.
This event will span the globe, with families participating in Europe and North and South America, before wrapping up Alaska. We will take a 12-hour event and make it last for 31 hours, pushing off the darkness for the USH community.
Each year members of the Usher community undertake challenges in the 26 days leading up to the day itself. This year Usher syndrome awareness day will take place on 16th September, and there will be a series of blogs and activities taking place from 22nd August onwards, in the build up to the big day. For more information please visit the Usher Syndrome Coalition
This event will span the globe, with families participating in Europe and North and South America, before wrapping up Alaska. We will take a 12-hour event and make it last for 31 hours, pushing off the darkness for the USH community.
Each year members of the Usher community undertake challenges in the 26 days leading up to the day itself. This year Usher syndrome awareness day will take place on 16th September, and there will be a series of blogs and activities taking place from 22nd August onwards, in the build up to the big day. For more information please visit the Usher Syndrome Coalition
july 2017: 9TH ANNUAL USHER SYNDROME FAMILY CONFERENCE
Saturday, July 15, 2016
Chicago, Illinois USA
These one-day annual family conferences are the largest gatherings in the Usher community. They're an incredible opportunity to learn the latest information regarding the management and developing treatments of Usher syndrome, while connecting with others in your USH family and many of the leading Usher syndrome researchers in the world.
To see information about this conference please visit the Usher Syndrome Coalition
Chicago, Illinois USA
These one-day annual family conferences are the largest gatherings in the Usher community. They're an incredible opportunity to learn the latest information regarding the management and developing treatments of Usher syndrome, while connecting with others in your USH family and many of the leading Usher syndrome researchers in the world.
To see information about this conference please visit the Usher Syndrome Coalition
USHERKIDS AUSTRALIA CELEBRATES USHER SYNDROME AWARENSS DAY 2016
September 2016
Mark Dunning, Chairman of the Usher Coalition, helped UsherKids Australia kick off the global celebration of Usher Syndrome Awareness Day on Saturday 17th September, 2016 at the Royal Children's Hospital, Melbourne.
Below is the video presentations from the day. We suggest downloading the presentation slides first and following along for clarity.
Mark Dunning, Chairman of the Usher Coalition, helped UsherKids Australia kick off the global celebration of Usher Syndrome Awareness Day on Saturday 17th September, 2016 at the Royal Children's Hospital, Melbourne.
Below is the video presentations from the day. We suggest downloading the presentation slides first and following along for clarity.
|
|
| ||||||||
|
|
|
|
|
|
usher syndrome awareness day 2015
On Saturday, September 19th 2015, David Shepard (father of 5 year old Louis who has Usher syndrome) and others took part in running a Bayside Marathon in Mordialloc, Victoria to coincide with the Equinox Marathon in Fairbanks, Alaska. The day was a great success with over $3,000 raised for Usher Syndrome Coalition in the USA, an organisation that raises awareness and accelerates research for Usher syndrome, while providing information and support to impacted individuals and families. The Usher Coalition raised over $50,000 globally during its very first Usher Syndrome Awareness Day.
