John o' Groats to Landsend

Wow, what an achievement!

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A huge thank you to Steve Anson and his team mates Nick, Penny, Rob and Mike. Over 9 days they have cycled the length of Britain from Lands End to John o'Groats all to raise money for Kabuki UK.

The fundraising total is incredible and we are blown away by this.

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Steve's youngest daughter, Emma is now 5 years old and in her first year of school – a milestone in any child and parents life but of particular significance for our family when she has already overcome so many challenges in her life. Just before Emma turned one, she was diagnosed with Kabuki Syndrome. 

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Steve says "Meeting other families and being able to talk to other people who have already been through many of the same issues was incredibly important to us and their support has helped us through the past 5 years immeasurably. 

Whilst I am sure the future will hold further challenges for Emma she is now healthy and happy – she can communicate, she can run around with friends and, in the last few months, she has learnt to eat – meaning we could finally remove her feeding tube. 

Having benefited so much from the Kabuki community we are now at a point where we want to start to put more back in – and help Kabuki UK to support and fund the vital work that they carry out in this community."

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Kilimanjaro Trek

A huge THANK YOU to Chris Dunne who has just completed the adventure of a lifetime and raised well over £3,000 in the process. To all of his generous sponsors, a heartfelt thank you for supporting Chris and his family and our charity.

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We would also like Chris' employers AppDynamics who have very generously matched Chris' fundraising total.

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Please take a minute to watch the video on the left which Chris made during his trip. The scenery is breathtaking.

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Here are Chris' words;

5 Years ago our daughter was born with a very rare syndrome - Kabuki Syndrome.

When you first hear this news, your world literally collapses around you, of all of the things you think you want in life, it dawns on you that all you really want is for your children to be happy and healthy.

Kabuki Syndrome is a very variable syndrome, some kids struggle to walk, typically have a cleft palate or lip, have severe learning delay and some will never be able to cope on their own into adulthood.

We are lucky enough that Penelope is affected mildly by the syndrome, we hope, following surgery and 1:1 teaching, she will live a relatively normal life.

Many children affected by Kabuki Syndrome or Clefts are not so lucky.

I would love it if you would support those children financially with a donation and morally support me as I climb the tallest freestanding mountain on earth.

I have had my own personal journey through depression and the ups and downs of having a child with a disability. To get out of the negative cycle I thought there was no better way than to set myself an audacious goal and raise some money in the process. (I hope it goes without saying that all costs of the trip were self-funded and all donations go to the charity, not my adventure!)

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Zip Wire Challenge

Here are a few pictures of Martin Evans and some of his colleagues from Paragon doing their ZipWire challenge in North Wales last week. Their fundraising is well over £2000

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Martin said "It was awesome and such a unique thing to do, we all had a great time and are looking for our next ‘team building’ event!
We are all really please we raised so much."

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SuperHero Run

Kabuki UK entered a team in the SuperHero Run in Regents park on Sunday 15th May. The weather was glorious and everyone had a great time. The final total is still to be tallied up but we think we might have raised an incredibe £4000!

It was such a success that we think we will be back there again next year so find those trainers and get out running. Over a thousand SuperHeroes descended on Regent’s Park in a bid to make the UK a more charitable place to live. The real-life heroes embarked on 5km and 10km fun runs to raise thousands of pounds for hundreds of extraordinary charities across the country like Kabuki UK!

We would like to say a huge thank you to everyone who took part, everyone who came to cheer the runners on and, of course, to everyone who made a donation. 

Fun Day

Here are some pictures from the fun day at Lime Tree Social Club, Coventry, where Steve Urch hosted a Family Fun Day with bouncy castles, raffles, games and lots of fun stuff. All proceeds were kindly donated to Kabuki UK. We would like to say a huge thank you to Steve Urch and his friends and family. It looks like it was a great day and raised a whopping £660!  

Toughest

Tim Stayne, Stuart McClelland, Craig Lascelles Rose and Matt Weitz wanted a challenge and found one in the form of "Toughest". Toughest is an intense 8K obstacle track, packed with 40 obstacles. Being held on the 23rd April, it's the first time Toughest has come to England.

Tim says; "We felt we wanted to use this opportunity to raise money for a charity and I immediately thought of my friend Helen. Helen has a wonderful daughter, Marcella. Since Marcella was born she has had operations on her heart, eyes, teeth and hips. She also has learning difficulties and fine and gross motor skill delays. It was questioned whether she might be autistic as she presents with some traits, but Marcella's paediatrician didn't think so and genetics got involved last year. After the Geneticist met Marcella, just by looking at her, she said she was 99% sure Marcella had Kabuki Syndrome from her features and all of the other difficulties she was presented with. Ater that a blood test confirmed it. To just know and understand what it was, was such a relief to Helen who, like most parents suffering the same, just wanted to know what was wrong with her daughter. 

This helped Helen seek the correct help, read the right books and join the right forums to meet others with the syndrome. Helen is a trojan and very modest about what, as a mother, she has to go through, but says they just get on with it with a sense of humour and understands there are others worse off who go through the pain every day. Her story made us feel we wanted to help those with Kabuki syndrome in some way.

Craig, who is a hairdresser in Epsom Rush, has left a box out for his customers and has had a wonderful response from his clients and our "my donate" page is doing unbelievably well."

The guys raised a phenomenal £1,267.50 for which we would like to say a huge thankyou.

Carol Singing

A big thank you to "Girlguiding Ellesmere District" who raised over £100 with their Christmas Carol singing. Well done girls!

London Triathlon

Here is Lesley Fair just before she completed the London Triathlon in Hyde Park. Lesley lives in Dubai and has completed several of these events in the Middle East, this was her first in the UK and she did amazingly well. Huge THANK YOU to Lesley for braving the cold waters of the Serpentine.

We Used To Make Things Fundraiser

Friday 15th May 2015

St Lukes, Penn Road, London N7 6RE

What an awesome evening this was! Burgeoning London band We Used To Make Things put on a very special fund raising gig all in aid of Kabuki UK. Launching their much anticipated first single 'Love In A Minor Key' they were joined by some very special friends for what was a great night. Raising over £1,500 for Kabuki UK.

With their unique style of alternative pop, they are destined for big things and you heard it here first.  Find out more about the band at www.facebook.com/weusedtomakethingsmusic

London Marathon

Jill Hookway has been running for 20 years and as her 45th birthday approached, she felt the urge to run her first marathon to mark the occasion. She also wanted to use the opportunity to raise funds for a charity. Whilst Jill waited for the ballot for the 2015 Virgin London Marathon, Noah, the baby son of one of her great friends, was diagnosed with Kabuki Syndrome. Jill gave her word that if she got a place, she would run for Noah and the other children like him. The training was far harder than Jill ever imagined. It has been a real sacrifice to do long runs every weekend since October, and by the time she hits the start line, Jill will have run 700 miles in training! Unfortunately, just days before the race, Jill was struck down with a flu that saw her bed bound. The organisers say that you absolutely must not compete unless you are 100% and unfortunately Jill had to pull out at the last minute. 

On a positive note she still raised over £1,200 for Kabuki UK and for that we would like to say a huge THANK YOU!

Football Club

Heather Lowe had the great idea of sponsoring a football club to raise both money for the charity and awareness of Kabuki Syndrome in general. They have bucket collections on the touch line and we would like to say a huge thank you to Heather and all of her family for their energy and support.

Great Yarmouth Lodge

We would like to say a huge thank you to the members of St Nicholas Lodge in Great Yarmouth for their support and wonderful fundraising. 

Vintage Tea Party

Alison Tildesley and her family held a wonderful vintage style tea party. They raised over £1,200 and the cakes looked absolutely amazing.

Party Night

Annie Teesdale and her friends and family raised over £800 by hosting a night in a pub with a Stone Roses tribute band. It sounds like it was a great night.

Bake Sale

Erik Hilton held a cake sale at school to raise money and awareness. for Kabuki. Here is ready to go with a friend, they sold out in 15 mins!

New Beginnings Day Nursery

We would like to say a huge thank you to New Beginnings Day Nursery, Loughton. The staff and children raised a whopping £325 with a green themed fun day, including a bake sale, sponsored sing, raffle and face painting.

Carlisle Blues Festival

Thank you to Nick and the team at the Carlisle Blues Festival who collected for two charities over the weekend and sent a cheque for £81.99 to Kabuki UK.

Tumble Tots and Race Night

Tumble Tots Raffle -  With thanks to Jackie Rixon for organising it and all the kind parents from the Wrexham and Chester Tumble Tots for donating prizes.

Also on December 1st 2012, Emma Gardner put on a Race Night in Androssan Accies Rugby Club and raised a whopping £1700 for Kabuki UK.

Thank you to all who supported the event. 

Kabuki Blues

Saturday 13th October First Kabuki Blues Night

At Worthenbury Village Hall

Thank you to everyone who made the first Kabuki Blues night a great success we raised just over a thousand pounds. Thank you to Jenny for bringing the torch and family down from Scotland and to Paul and Sally for these wonderful photos of the evening.

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Hopscotch Nursery

Saturday 7th July. Thalia Staianos Nursery did a sponsored walk from the Brighton Pier to the West Pier in Brighton. All of the Children from the nursery and their parents have been invited to take part!

Hopscotch Portland Road Nursery also organized a charity auction with a huge amount of fantastic Prizes and a magician to keep the children entertained!

They also sold Tea Towels that had either a drawing that that the elder children have done of themselves, or hand prints of the younger children. The profits from the Tea Towels went to Kabuki UK.

The Manager of the Nursery – Jane Spencer has been amazing and all of the staff are So fantastic in dealing with Thalia and her extra needs – we cannot thank them enough.

Thank you to everyone who took part

Worthenbury Blues Festival

Kabuki UK will have a stall for fundraising - This is a great event and if you like blues come along and and join in the fun.

Pamper Evening

Friday 4th May Lisa Johnston raised £475 for Kabuki UK with a pamper evening at Zooma near Bournemouth. Thank you to everyone who took part in the evening.

Marathon

Fiona Parsons completed the Manchester Marathon (26 miles) in 4 hours and 13 minutes, through high winds and torrential rain on April 29th in aid of Kabuki UK! Thank you so much.

Bag Packing

Joe and Jessica Connon, Stephanie McQuade, Dylan Scanlan, Aimee-Kate, Megan Carrigan and Lucy Lowe all bag packing at their local ASDA and raised a wonderful £308.50 for Kabuki UK - Thank you all involved.