Tag: Usher syndrome

usher conference 2018

Jul 31, 2018

Last week the International Symposium on Usher Syndrome was held in Mainz. It was a 3-day event,...

the usher closet

Jul 12, 2018

<<click here for English version>> Een tijdje terug hadden we een bijeenkomst met...

2 years with Usher syndrome

May 26, 2018

2 jaar geleden kregen we de Usher diagnose. In een klein kamertje in een ziekenhuis in Antwerpen....

wat je niet ziet op instagram

Apr 17, 2018

>> click here for English version << Je hebt de foto’s wellicht gezien. Jackson en ik...

the importance of diet

Feb 9, 2018

I doubted whether I should put a question mark behind this title, but no. A healthy and balanced...

sweet inspiration: rebecca alexander

Jan 22, 2018

Internet can give you the worst and the best when you start googling after a diagnosis. I was...

do something

Nov 20, 2017

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

run4usher with teamjackson

Sep 7, 2017

I wrote about running before. How it’s my therapy, my daily routine, my time in nature. I love it....

about ava

Jul 10, 2017

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

to all ushermoms and dads

Apr 11, 2017

A little while back I was invited to speak at a meeting for Usher parents. What was I going to...

rare disease day

Feb 28, 2017

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

am I wrong ?

Feb 1, 2017

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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Who’s that mom

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