Support at diagnosis
Everyone’s experience with Usher syndrome will be different, however there are many people who have faced some of challenges you may now be facing. It may be helpful to find some professional support to help you talk through the impacts of Usher syndrome on you emotionally and physically, but if you need just to chat with another parent who has been there before and can share their experiences with you, you can contact us at info@usherkidsuk.com
If you need practical support following diagnosis you may be able to get help from a Eye Clinic Liaison Officer (ECLO), based in your local eye hospital. An ECLO is someone who "works directly with people with low vision, deteriorating vision, sight loss or impending sight loss, and their carers. The support is both practical and emotional, and is extended to carers and family members. They provide timely one to one support and quality information and advice, emotional support and access to other statutory and voluntary services." (Royal National Institute for Blind People). You can use this ECLO factsheet to find contact details for the closest ECLO to you.
Read through the Support After Diagnosis section to understand what help and advice exists for the various challenges Usher syndrome presents. We hope to use this section to cover topics which are challenging for Usher families, so please let us know about any challenges you are facing, or any questions you have. You’ll gain some insights and hopefully some optimism for the future from the Usher Stories written by individuals and families living with Usher syndrome.
Below are links to a range of groups who provide services for some aspects of Usher syndrome.
If you need practical support following diagnosis you may be able to get help from a Eye Clinic Liaison Officer (ECLO), based in your local eye hospital. An ECLO is someone who "works directly with people with low vision, deteriorating vision, sight loss or impending sight loss, and their carers. The support is both practical and emotional, and is extended to carers and family members. They provide timely one to one support and quality information and advice, emotional support and access to other statutory and voluntary services." (Royal National Institute for Blind People). You can use this ECLO factsheet to find contact details for the closest ECLO to you.
Read through the Support After Diagnosis section to understand what help and advice exists for the various challenges Usher syndrome presents. We hope to use this section to cover topics which are challenging for Usher families, so please let us know about any challenges you are facing, or any questions you have. You’ll gain some insights and hopefully some optimism for the future from the Usher Stories written by individuals and families living with Usher syndrome.
Below are links to a range of groups who provide services for some aspects of Usher syndrome.
The Usher Syndrome Coalition is a charity based in USA which is working internationally to raise awareness and accelerate research, while providing information and support to impacted individuals and families. They strive to be the most comprehensive resource for the Usher syndrome community, bridging the gap between researchers and families.
RP Fighting Blindness is a national charity that works hard to stimulate and fund cutting edge research to find a treatment or cure and support those affected by Retinitis pigmentosa (RP), which is an inherited condition of the eye that leads to loss of vision and blindness.
Sense is a national charity that supports people who are deafblind, have sensory impairments or complex needs, to enjoy more independent lives.
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The National Deaf Children's Society is the leading charity in the UK dedicated to creating a world without barriers for deaf children and young people.
Guide Dogs is a national charity which works with people who are blind and partially sighted to be enable them to enjoy the same freedom of movement as everyone else. In addition to their guide dog services, they have a range of resources and support available for children and young people.
The Molly Watt Trust was set up to raise awareness of Usher syndrome and offer support to those living with the condition. It brings together people living with Usher syndrome, to share experiences and ease isolation. The Molly Watt Trust is very active on social media, sharing information and experiences and continues to fundraise for small items or equipment to enhance life with Usher Syndrome.
The Moorfields Eye Charity supports the pioneering work of Moorfields Eye Hospital and its research partner, the UCL Institute of Ophthalmology, making a difference for patients at the hospital and for people with sight problems around the world.
VICTA supports children and young people who are blind or partially sighted and their families across the UK. If you are the parent of a blind or partially sighted child or young person or you are visually impaired yourself and under the age of 29 then VICTA can help.
LOOK UK supports young people (up to 29yrs old) and families living with a vision impairment. They do this through mentoring schemes, Skype chat groups, youth forums, creative 'voices' and leadership events.
The Ear Foundation works to help bridge the gap between clinic-based services for people with hearing loss, where today's exciting hearing technologies, such as cochlear implants & bone conducting hearing implants are fitted, and home, school and work where they are used in daily life.
Their vision : All deaf children, young people and adults have the opportunity to hear, communicate and develop spoken language using the latest technological interventions including hearing aids, cochlear implants, bone conducting hearing implants & assistive devices such as FM Systems.
Their vision : All deaf children, young people and adults have the opportunity to hear, communicate and develop spoken language using the latest technological interventions including hearing aids, cochlear implants, bone conducting hearing implants & assistive devices such as FM Systems.
CICS is an independent, voluntary group run by parents whose children have cochlear implants to help others whose children already have implants and those who are considering cochlear implantation for their child whether unilateral, simultaneous or sequential bilateral. They offer first-hand experience of the difference that cochlear implantation can make to the lives of deaf children and their families. They can help with issues that surround life with an implanted child to provide a vital part of the pre and post implantation process – support for parents by parents. They have over 1,200 families in their database and can match families by individual circumstances such as their child’s cause of deafness, method of communication, additional needs, etc.
The Royal National Institute of Blind People (RNIB) is a national charity serving everyone affected by sight loss. Whether you’re losing your sight or you’re blind or partially sighted, our practical and emotional support can help you face the future with confidence.
Fight for Sight is the UK’s largest charity funding pioneering eye research since 1965, with the aim of supporting research that will reduce sight loss in adults and children. Fight for Sight invites applications for research grants, and funds researchers based at universities and hospitals across the UK.
ROYAL SOCIETY FOR BLIND CHILDREN (RSBC)
The Royal Society for Blind Children is on a mission to make sure every single blind child has the self-belief and skills to fulfil their full potential. They have set themselves a challenge of helping 11,000 blind and partially sighted children and young people in England and Wales by 2020.