FSHD first affects your facial muscles, making it hard for FSHD patients to express their emotions. They simply cannot show how they feel.

Although FSHD patients aren’t physically able to laugh or smile, it doesn’t mean they’ve lost their sense of humor. That’s why we decided to use this specific dramatic consequence of the disease to raise awareness for it.

We staged a comedian’s worst nightmare: a silent, non-responsive crowd during the performance. This happened to top Dutch comedian Ronald Snijders.

Without Ronald’s knowledge we filled a theatre with FSHD patients, who due to ther condition, were unable to respond during the show. 10 Minutes into Ronald’s show, A FSHD patient relieved Ronald from his painful experience and explained to him how it feels to not be able to express your emotions. Ronald was so deeply affected by the experience that he became an ambassador for the Foundation.

This stunt got a great deal of careful prepareation. We could not tell the comedian anything in order to achive a genuine reaction. We needed a genuinely fullny and highly respected comedian (proven funny: Ronald Snijders was nominated for the best comedian show 2017) And a management who was willing to play along with the stunt. We also worked in close collaboration with the Goudse Schouwburg (the theater).

A large group of FSHD sufferers participated in a capacity filled theater. Ronald arrived to do his performance without knowing what would happen to him. A severely affected FSHD patient was prepared to do the revelation of the stunt, which moved Ronald visibly. The same evening the video of the stunt was widely picked up on social media and by the press. Directing everyone to the campaign website, where you could find interviews with patients, more information and the option to donate.

With a very limited budget, we found an impactful way to make the (social) impact of the FSHD disease visible.

Visibly moved, Ronald became ambassador of the foundation the same evening. The stunt got picked up online and Ronald told his story at different tv & radio stations.

In numbers:

1.474.468 views

3.454.092 people reached

513.290 media value.

In 2 weeks 4 times more donations than normally in a year.

The stunt resulted even in a benefit performance led by Ronald. Together with several well-known comedians. The proceeds are huge and with the € 107,000, an additional research into the loss of facial expression has now been made possible. This could never have happened without the stunt.