F(l)ights for a cure 

Crowdfunding for Vivian





A warm welcome on Vivian's homepage - 

we are happy that you found your way here!

 


We are launching a crowdfunding for our daughter Vivian, who suffers from a rare disease called Dravet syndrome, to participate in a promising clinical trial in the United States. As travel expenses are not covered we are looking for support and are very grateful for any kind of help.


***From the bottom of our hearts a big thank you to all our dear donators!! We are deeply touched and delighted of the great solidarity that we are allowed to experience! 

We ask for your understanding that we cannot thank you for all donations individually, but we appreciate each and every one of them!***





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News

May 2022

After quite a while we are glad to give a latest update on our travels. We have been in Miami in April 2022 for about two weeks. This time the trip was much shorter, only around 2.5 weeks. This will be the same as of now. Vivian will be dosed in a 4 months rhythm now. The next dosing will take place in August 2022. As soon as it might be allowed we are happy to inform how she is doing. So far, this is it not the case unfortunately. 


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We wish all our dear supporters and followers a very merry Christmas and all the best for 2022!





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In the beginning of September, Vivian received a dose of the study medicine. We are very thankful and glad that we made it to that point. However, in a clinical trial it is common that you are not supposed to inform about how things are going. So unfortunately, it is not possible to write how Vivian is doing with it. We thank you for your understanding. Apart of that, we are doing fine. It didn't quite work out with the apartment we were looking for. Now we have to change every once in a while but that is ok. 



In the beginning of August we had the first visit at the Children's Hospital.




Songs for Vivian: Thomas Straumann sang for Vivian in the pouring rain! Thank you so much TomTom for "singing in the rain"!

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Report in the newspaper: St. Galler Tagblatt July 5, 2021 











 


























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Broadcast on TVO (Tele Ostschweiz) July 4, 2021















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