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.
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.
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?
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.
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?
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.
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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).