Tag: Usher Syndrome Coalition

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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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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