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News

1 September 2020

Nikki’s around the world Quiz in aid of The Butterfly AVM Charity

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10 July 2020

Support us via Amazon Smile

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28 February 2020

Tyser girl’s Northumberland Coastal Marathon

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5 February 2020

Research Update. Why your contribution is so important!

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9 January 2020

Tom Dyer – Table Mountain

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14 November 2019

Nikki Lilly Youngest Ever Bafta Special Award Winner

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6 November 2019

The Butterfly AVM Charity Dinner and Dance 2019

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6 November 2019

Nikki Lilly Speaking on ITV London NEWS

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6 November 2019

Vascular Anomalies Special Interest Group brings together a range of specialists this December

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6 November 2019

BREAKTHROUGH IN AVM RESEARCH!

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The Butterfly AVM Charity

12 hours ago

The Butterfly AVM Charity

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The Butterfly AVM Charity

1 day ago

The Butterfly AVM Charity
Well Done to Chris for trekking up and down The Old Man of Conniston in the Lake District to raise money for our Charity. You are a ⭐️Image attachment

Well Done to Chris for trekking up and down The Old Man of Conniston in the Lake District to raise money for our Charity. You are a ⭐️ ... See MoreSee Less

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The Butterfly AVM Charity

3 days ago

The Butterfly AVM Charity
Well done Andy for completing your 5k Challenge. https://www.justgiving.com/fundraising/george-christou1

Well done Andy for completing your 5k Challenge.

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The Butterfly AVM Charity

4 days ago

The Butterfly AVM Charity
Well Done to Steve & Myri for completing their 5k Challenge. Come on everyone get out there keep fit and raise money for our amazing Charity. You can do it! Xxx https://www.justgiving.com/fundraising/george-christou1

Well Done to Steve & Myri for completing their 5k Challenge. Come on everyone get out there keep fit and raise money for our amazing Charity. You can do it! Xxx

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Nominated and donated, good luck everyone ❤

The Butterfly AVM Charity

4 days ago

The Butterfly AVM Charity

If you have not pre-ordered a copy of my 1st book please click on the link. Find out all about my live, living with an AVM and trying to make the most of every day xx :)

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Nikki Lilly's Come on Life: Highs, Lows and How to Live Your Best Teen Life

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Nikki Lilly's Come on Life: Highs, Lows and How to Live Your Best Teen Life
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I paid for mine.

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Support us via Amazon Smile - We have just registe Support us via Amazon Smile - We have just registered ourselves as a designated Charity with Amazon smile 😊 So please, when you are having some retail therapy make it even more special as Amazon smile will donate 0.5% to The Butterfly AVM Charity for everything you buy!!! Together we can make a change x - Link in bio. Have a lovely weekend all x
Please remember that from today we must all wear o Please remember that from today we must all wear our masks when travelling #butterflyavmcharity #staysafe
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@ellischara has arranged this charity football tou @ellischara has arranged this charity football tournament in order to raise money for @butterflyavm. . For all donations to @ellischara just giving page, the link is in the bio 🦋 Ellis would like to thank @athleticdevelopmentclub @thefootballdoctor @trentparkfootball
Today we highlight AVM researcher Fanis Michailide Today we highlight AVM researcher Fanis Michailides whose research is funded by The Butterfly AVM Charity. “Earlier work carried out by Prof. Veronica Kinsler’s lab, and funded by your Charity identified three faulty genes responsible for causing one third of AVM cases. During the first year of this PhD project we are designing methods to generate these faults in healthy blood vessel cells, with the aim of generating ‘smart-cells’ that mimic AVMs in test tubes. This is proceeding very well, and this will give us very useful tools for testing out drugs on the cells in test tubes. Thereafter anything we find we would test in the zebrafish again, to see if we can get even better results. And after that we would be looking at patient clinical trial this time. In parallel we continue to investigate additional causes for AVM in the other two-thirds of patients. We are also actively seeking patients having surgery at GOSH so that we can be there to collect samples for research if they wish. We are very confident of future breakthroughs in the understanding of AVM’s that will benefit patients directly with definitive treatments.” Fanis Michailides
#Repost @samanthapearceisaacs ・・・ Sofia took #Repost @samanthapearceisaacs ・・・ Sofia took this photo Monday night and I gotta say it’s fast become the only photo I like my new chop in so far. It’s taking a bit of time to get used to this new DO but it’s step one of the 2020 transformation! January has been long hard and fabulous. And every page across my diary I have #getorganised #justdoit to keep me on track of the months goals & mission. Starting with https://roughrunner.com @rough.runner WE ARE DOING IT !!!! 🤯🤯🤯🤯 it’s all booked, our first family event for the 40 things for Zoe’s 40th. And we have Dean ( brother in law without the marriage 🤣) to thank for the idea & set up. We will be raising a bit of money to go towards research for the AVM butterfly @butterflyavm and our team name is #scrambledlegs - if you’d like to support us please donate to the link in the comments a £1 is all you need to do. What next ! Family camping 😳 mom wants a tattoo 🙄 and I may even cook a meal or two ! I Hope whatever goals you set for January you smashed them or maybe let go of 1 or 2 🎉💫
#Repost @nikkililly_ ・・・ i don’t even know #Repost @nikkililly_ ・・・ i don’t even know what to say... thank you so much @bafta for honouring me with SUCH a special award, i still can’t believe it’s mine. i couldn’t have had a better night and couldn’t have spent it with more talented, lovely, humble and kind people. massive well done to my girl @lindseyjrussell for winning presenter of the year! i love u, no one deserved it more☺️also so good to finally meet and chat with @bellaramsey! congratulations on your win beautiful. you are immensely talented💓thank you to @cbbc for taking a chance on little 11 year old Nikki, enabling me to tell my story and helping me to break down the barriers of what so many today believe they ‘should’ look like or how their life ‘should’ be. there is so much pressure and stress on my generation from all different angles, so i hope in my tiny corner of the internet or tv i can be an escapism to those who need it. just THANK YOU, THANK YOU, THANK YOU❣️this is a night that i will cherish forever.
#Repost @officialtgiof So Proud of you Nikki x ・ #Repost @officialtgiof So Proud of you Nikki x ・・・ Fifteen year-old YouTuber, presenter and charity campaigner @nikkililly_ this week became the youngest ever recipient of a @bafta Special Award, celebrating her outstanding contribution to children's media. She's rightfully been recognised for raising awareness of social issues and inspiring young people around the globe in the face of extraordinary personal challenges. Nikki was diagnosed with arteriovenous malformation at six years old; a life-threatening medical condition which has resulted in a visible difference to her physical appearance. Despite this, she started a vlog aged just eight, covering topics including disability, cyber bullying, #mentalhealth #baking (she won Junior @britishbakeoff in 2016) and #beauty. Oh and she's also launched the @butterflyavm charity with her Dad and has interviewed the likes of @jeremycorbyn and Teresa May. And let's not forget the @prideofbritain ‘Child of Courage' award she scooped too! She's achieved all these mind-blowingly inspiration things, while enduring 38 operations to help her disability. She's #brave she's #strong she's beautiful and she's an inspiration to every girl, teen and woman on the planet. Described as a 'pioneer for her generation', we think you're truly incredible Nikki! 🥰 #wcw #embracingdifference #live #learn #thrive #inspirationalwomen
FUNDRAISER FRIDAY! . Good morning to all our follo FUNDRAISER FRIDAY! . Good morning to all our followers. . @koupeslondon will be donating a percentage of takings, to our charity, from the Monkfrith School Xmas fair. . Thank you so much!!!
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