WHAT IS USHER SYNDROME?
What would you choose, being deaf or blind?
I do not have a choice,
Usher syndrome will make me both deaf and blind!
Still, this is reality for people suffering from Usher Syndrome. The diagnosis has a great impact on the future perspective. No treatment has been found yet.
TAKE ACTION
Just like our ambassador Machteld Cossee, come into action for Stichting Ushersyndroom! As a lifestyle coach at AllemaalVitaal [all vital] and a fervent runner, Machteld is like no other aware of the importance of good health.
COLLECTED SO FAR € 753.229.=
Stichting Ushersyndroom spend the raised funds on scientific research into a treatment for Usher Syndrome and for a better quality of life. Do you want to know which projects we already financed?
ABOUT STICHTING USHERSYNDROOM
Stichting Ushersyndroom [Usher Syndrome Foundation] is a network organization. We are all people living with Usher Syndrome, supported by the people around us. We fight for a treatment and for a better quality of our lives.
OUR DREAM
IF YOU BECOME BOTH DEAF AND BLIND…..
WHAT IS LEFT TO DO?
As ambassador of Stichting Ushersyndroom Joyce de Ruiter, who suffers from Usher Syndrome herself, regularly brings the foundation to the attention of the media and gives lectures as a professional speaker and inspirer. With her story she inspires organisations to be resilient and flexible in times of change. In this way she holds up a mirror to the faces of hundreds of professionals, managers, entrepreneurs: fall or go on?
PROJECTS
We are fighting to enable researchers to timely find a treatment for stopping the process of becoming both deaf and blind. It is complex and it takes many studies and breakthroughs to treat this disease.
USHIE, OUR MASCOT
Ushie, our mascot with black sunglasses and headset, is hot! USHIE is the symbol of all people who cannot hear and see well because of Usher Syndrome. USHIE is gender-neutral, cool and very lively!
LATEST NEWS
THIS WEBSITE
By clicking the ‘eye’ in the upper left corner of the screen, you can set your personal preferences.
THIS WEBSITE
Stichting Ushersyndroom has an ANBI status, which makes your gift tax-deductible (in the Netherlands) for the income tax.
The tax authority makes a distinction between a regular gift and a periodic gift.
In addition, Stichting Ushersyndroom is an official charity. This means that we comply with stringent quality requirements. This is supervised by the Central Bureau for Fundraising (CBF).
HURRAY! Everything you want to know about Usher Syndrome has now been put together!
/in news /by Ivonne BressersStichting Ushersyndroom launches the Usher Syndrome knowledge portal. Today, a long-cherished dream of many families confronted with Usher Syndrome will come true. So far, information and knowledge about Usher Syndrome […]