Burgemeester Welcome participants conference Spinal Muscular Atrophies (SMA)

Speech Mayor Jan van Zanen

Utrecht, Hotel Mitland, 7 April 2017

Ladies and gentlemen,

Welcome to Utrecht, welcome to the heart of the Netherlands, the very heart of the Netherlands. I hope you enjoyed your second congress day.

The city of Utrecht is very happy to welcome this year's SMA conference. Not only because the SMA Expertise centre has its headquarters in our city.

But also because the city of Utrecht - and I personally would like to underline that - fully endorses a stronger position of all people who suffer of this terrible muscle disease.

It’s good to know that the expertise in Europe is available here and will be shared these few days. Combining expertise in Europe and beyond and support for parents and patients is of great importance.
For many, SMA is an unknown disease, but not for me anymore. I joined the Singel Swim two years ago and swam in the canals of Utrecht to show my compassion for the two Dutch muscle disease organizations FSHD and Spieren voor Spieren. The funds raised by the Singel Swim can be used for research.

And funds and support are still needed. Although the development of medication is on its way, the treatment and survival of SMA patients is very uncertain. Thanks to the commitment of the board of SMA, there’s a future for the parents of children who suffer of SMA.

I am happy and proud that the City of Utrecht houses the SMA Expert centre at Utrecht Science Park and can contribute to further research. A centre with a dedicated team, a warm and direct patient involvement and excellent research into the disease. A centre where patients are 'happy'. A remark with which I hope to round off your second congress day in a positive way. Please enjoy your stay in our city and have a pleasant dinner tonight at restaurant Broers. And do come back with your family and friends. Carry on. Thank you.