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Kabuki UK is 10 years old, how can that be!!!


As we come out the hardest of years I wanted to take this opportunity to say that, as always, I’m full of hope and optimism. 


I hope that newly diagnosed families now have a very different experience to those of us who went through diagnosis 10, 15, 20 years ago. I hope that we have been able to create a community and that our members and member families take solace in knowing that we are all in this together. 


I take huge pride in seeing our members growing older and advocating for themselves and each other, I hope that over the next few years we will see our young adults flourish and be true role models for our younger members.


The world is a very different place to what it was 10 years ago, and who knows where we will be in 10 years time. Hopefully, by continuing to work with our partner organisations around the world and by building on our links with the medical profession we will be able to take the charity forward in new directions. The research that we see going into Kabuki Syndrome (type 1 and 2) fills me with hope for the future.


I want to personally thank those of you who have fundraised for the charity over the years, we will be needing much more of that. I also want to thank our small but dedicated team of Trustees, Beth, Lisa, Kate and Rory, some have been here since the beginning and some are new but you  all bring a unique experience of Kabuki Syndrome.


As a birthday present to our members we have these adorable teddies to give away, they are wearing our new “10 Years Stronger Together” hoodies, you can order your teddy here


I also want to tell you about our new shop where you can get your own hoodie to match the teddies, that can be found here and all proceeds come directly to the charity.


We can’t wait to see everyone at the postponed Family Day in September.

I am a different person to the frightened new mum with the poorly baby that I was 10 years ago. Harry has shown me that with enough time and enough determination we can do anything. So here’s to the next ten years!

With much love from myself and the Trustees 


Sally Trewartha, Chair, Kabuki UK

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