Kabuki UK

Welcome to Kabuki UK

The only UK charity that supports families affected by Kabuki Syndrome.

Kabuki UK - COVID19 Update - 8th June 2020

Family Day

At the recent Trustees meeting we discussed the 2020 Family Day.

After much consideration we have decided that the best option is to cancel the Family Day for this year, our reasons are as follows;

Most importantly we do not want to take any risks with the health of our members, your safety is our top priority.
In order to make the event safe we would have to limit the number of tickets significantly which would defeat the purpose of the event.
We do not know how government guidelines will change over the next few months but it would be very difficult to maintain social distancing at the event even with greatly reduced numbers.
We cannot guarantee the weather and in the event of bad weather we would be confined to the marquee.
Even if it were possible to do so we would not want to source an alternate venue as Hatton Country World have been very good to us and we want to remain loyal to them.
We do not want to ask our members to travel and stay away from home (even if this is permitted by October).

We have removed the booking form from the website and will refund any tickets purchased so far.

We are hoping for Saturday 26th June 2021 for the Family Day next year, we will confirm this when we can. That will be our 10th birthday!

Film

Just because we can’t be together doesn’t mean we can’t mark the Family Day in some way. We thought it would be nice to make a film of our families at home. Please have a look below and on the Facebook page for instructions on how to send in a clip. We have only had a couple of clips sent in so far but it would be a lovely way to remember the Family Day that never was.

Here are the instructions. Please try to follow them so that we can use your clip:

Download the green heart image.
Print the green heart from the Facebook Page, or make your own if you can’t print it.
Turn your camera phone LANDSCAPE; that is, so the shot is wider than it is tall (no vertical videos please).
Start your film so that the whole screen is filled with green.
Move the camera back so that we can see you and your family - have some fun with this, give us your best smiles!
Zoom back in on the green heart so that your clip finishes on the whole screen filled with green.
Send your clip via WhatsApp to Sally on 07946433444 as soon as possible (please do not email them or post them to Facebook).
There is an example of how we would like them to look on the Facebook Page.
We will then have some fun with the edit and hopefully come up with something good to share.

Here are some do’s and don’ts:

Please, no vertical videos: turn your phone so that you are filming LANDSCAPE like the example on the FB page.
Keep it short: just a few seconds is enough.
No need to say anything, as we will not be using sound.
Daylight is best, so if you can get outside that’s great.
Fill the shot with green at the beginning and end.
Have lots of goes, then send us the one that you think is best; just one clip per family.

Also, this is boring but we have to say it. By sending in the clip you are giving Kabuki UK permission to use the clip in this film and in any others which we may make in the future. This film will be used in our social media and online - if you are not comfortable with your image being used in this way please do not send in a clip.

Grant Scheme

The Grant Scheme is still running, forms can be found at please remember the we have a Grant Scheme for educational equipment as well as mobility equipment such as trikes and bike trailers should you need anything during this unprecedented time.

With much love

Sally, Beth, Lisa, Kate & Rory

The Trustees

Kabuki UK - COVID19 Update - 15th April 2020

Kabuki UK is supported by Genetic Disorders UK. Genetic Disorders UK has been working with the Clinical Genetics Society, The British Society of Genetic Medicine, and The Association of Genetic Nurses and Counsellors to produce a series of information leaflets in relation to Covid-19 specifically for the rare disease community. We have uploaded the leaflets for you to download HERE, we hope that you and the families you support will find them useful.

Family Day 2019

About us

Everyone involved with the running of this charity is a volunteer who has a child with Kabuki and so we understand better than anyone the worries that come with such a diagnosis.

Ben the Bear

Meet the newest member of Kabuki U.K. Ben the Bear. We have given away over 100 of these cute cuddly 8 inch bears.

Ben is proudly

wearing his I ❤

Someone with

Kabuki t shirt.

Aaron's blog

Aaron Oxford shares his thoughts on everything from love to politics and living with Kabuki Syndrome.

Thank you

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