Sharing knowledge and information with other patient organisations all over the world, but especially within Europe, is essential. Not only to give the lobby in Brussels a strong message but also to get an overview of all patients. Every European country must set up its own CRUSH database to get an overview of all patients. An ENT specialist and an ophthalmologist must be interested in Usher in their own countries. The Usher Syndrome Foundation wants to support the European Usher organisations in this and mobilise them to do this.
Don’t you have an organisation?
USHER AWARENESS DAY
Every year on the third Saturday of September, we celebrate International Usher Awareness Day. This day coincides with the autumn equinox. On this day the sun is directly above the equator and the day and the night have the same length. Following the autumn equinox, there will be less light every day; days get shorter and nights get longer.
The autumn equinox is the ultimate metaphor for the Usher Syndrome, because this experience of seeing increasingly less light is an irreversible process for people suffering from Usher Syndrome. The light-sensitive eye cells that have died in the eyes and the cilia in the ears will never come back.
Being diagnosed for Usher Syndrome is a frightening experience.
Therefore we want to make Usher Syndrome known around the world and so create a better understanding of the impact of getting both deaf and blind. Everyone in the world must know that people suffering from Usher Syndrome are remarkably driven and motivated to keep taking part in society. #USHDAY
In the Netherlands there are two foundations with a specific focus on Usher Syndrome and that acquire funding for scientific research into Usher Syndrome:
- Stichting Ushersyndroom is a foundation for and by people suffering from Usher Syndrome and it is committed to acquiring more funding for improving the quality of life.
- Stichting Klavertje2 is a foundation set up by family members of Roos and Lotte Klaver. The foundation was discontinued in the summer of 2020
The foundation below is active in the area of deafblindness:
- Stichting Wetenschappelijk Onderzoek Doofblindheid (SWODB) [foundation for research into deafblindness] is a foundation that wants to create more attention and awareness for deafblindness and to promote the scientific research into deafblindness.
- Ava’s voice – The objective of Ava’s Voice is to offer financial help and support to families coping with loss of hearing and eyesight.
- CUREUsher – A British/Irish fund-raising organisation for more knowledge, participation, cooperation and research into Usher Syndrome.
- HearSeeHope – HearSeeHope is committed to generate more attention for Usher Syndrome and research.
- Leben mit Usher-Syndrom e.V. — This organisation supports and guides people suffering from Usher Syndrome and their families.
- Megan Foundation – Megan Foundation is a fund-raising organisation for developing programmes for scholarships, youth camps and trips for people suffering from Usher Syndrome.
- Molly Watt Trust Organisation – The Molly Watt Trust Organisation is a small charity fund with the intention to make a difference for people living with Usher Syndrome.
- Noisy Vision – 2 brothers with Usher Syndrome, who have converted ‘being an Usher’ in something positive.
- Retina International Special Interest Group (SIG) — A website providing information about Usher Syndrome.
- Save Sight Now — An American fund-raising foundation committed to stimulating scientific research into USH 1B.
- Saving sight and sound — An American fund-raising foundation committed to raise awareness and funding for research and development of cures for vision loss associated Usher syndrome and to purchase listening devices, for families in the Tampa Bay Area.
- Treatrush – Treatrush (TreatREtUsher) is the name of a European research network with the objective to find a treatment for the blindness caused by Usher Syndrome.
- Usher 1F Collaborative – The mission of the Usher 1F Collaborative foundation is to finance medical research into finding an effective treatment to save or restore the eyesight of people suffering from Usher Syndrome type 1F.
- Usherkids Australia – UsherKids Australia was established in 2015 to share experiences of the families with young children diagnosed for Usher Syndrome.
- Usher Kids UK — is a British network set up to support, inform and connect children suffering from Usher Syndrome and their families.
- Usher info — A French website containing information about Usher Syndrome, developed by the Fondation pour l’audition.
- Usher Taubblind — A self-help organisation in Austria offering information about living with Usher Syndrome.
- Usher III Initiative – The Usher III initiative subsidises eight leading scientific researchers in the area of retina and cochlear research at various top-universities in the USA and Europe.
- Usher syndrome Australia – Usher Syndrome Australia is a non-profit organisation established for raising funds in support of national Usher Syndrome research programmes and early signalling.
- Usher Syndrome Coalition – Usher Syndrome Coalition is committed to generating more attention for Usher Syndrome, accelerating research and stimulating the set-up of an Usher community.
- Ushersyndroom.be – A Belgian site, managed by Tinne Eeckels with Usher Syndrome, on which you can find all information about Usher Syndrome and other forms of deafblindness.
- Usher 2020 Foundation – Usher 2020 Foundation (U.S.A.) finances and cooperates with various partners to transfer treatments from the lab to the clinic.
- Usher Syndrome Society – The Usher Syndrome Society is a non-profit organisation from the USA that uses artistic and educative events to increase the awareness and the financing of Usher Syndrome and to, eventually, find a remedy.
- UshOneSee — A fund-raising organisation that acquires funds to stimulate scientific research into USH 1C
- Vaincre Usher2 – Acquires funds for French researchers to support them.