Tag: Usher syndrome

do something

I am still buzzing from this weekend. Run4Usher raised almost €27.500 for the Usher Syndrome...

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about ava

I met her on a Wednesday, June 28th to be exact. The Usher Syndrome Coalition posted a video,...

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rare disease day

A year ago, I did not think this date would ever affect us. February 28th: Rare Disease Day....

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am I wrong ?

Am I wrong to not want to think about what lies ahead of us? To not want to face the harsh reality...

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help us find a cure, save sight now and donate here

Who’s that mom

PR entrepreneur, wife, mother, runner, dog lover, born in Holland, living and working in Belgium.

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How I became Ushermom

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