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News

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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16 September 2019

The boy was dying. Zebrafish helped save his life

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7 February 2019

The Butterfly AVM Olympians

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The Butterfly AVM Charity

2 weeks ago

The Butterfly AVM Charity
I am very proud to announce that my 1st book will be out on the 1st of October 2020 but is available to pre-order from Waterstones & Amazon. ( The links are below). The book is a journey about the highs and lows of my life and living with an AVM, about making the most of every day and a survival guide for a teenager, Oh and of course! mixed in with a few baking recipes! https://www.waterstones.com/book/nikki-lillys-come-on-life-highs-lows-and-how-to-live-your-best-teen-life/nikki-lilly/9781406392821 https://www.amazon.co.uk/Nikki-Lillys-Come-Life-Highs/dp/1406392820/ref=sr_1_1?dchild=1&keywords=nikki+lilly&qid=1589717609&s=books&sr=1-1 Please share #NikkiLillyscomeonlife

I am very proud to announce that my 1st book will be out on the 1st of October 2020 but is available to pre-order from Waterstones & Amazon. ( The links are below). The book is a journey about the highs and lows of my life and living with an AVM, about making the most of every day and a survival guide for a teenager, Oh and of course! mixed in with a few baking recipes!
www.waterstones.com/book/nikki-lillys-come-on-life-highs-lows-and-how-to-live-your-best-teen-life...
www.amazon.co.uk/Nikki-Lillys-Come-Life-Highs/dp/1406392820/ref=sr_1_1?dchild=1&keywords=nikki+li...
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The Butterfly AVM Charity

1 month ago

The Butterfly AVM Charity
We are all AVM Warriors! A brave heart can never die x #Blogosphere #NikkiLilly #ButterflyAVMCharity

We are all AVM Warriors! A brave heart can never die x
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you look stunning hun xx

You are such an amazing lady!

The Butterfly AVM Charity

1 month ago

The Butterfly AVM Charity

Our Charity is happy to highlight fundraisers Amazing Challenges to raise money for other causes and in these uncertain times what better than to help raise funds for the NHS! Buy buying masks for frontline staff. A contribution will also be made
to buy reuseable masks for the most disadvantaged in parts of Africa.
Our friend Hawks will be fasting for an unbelievable 40 days! He will do this by only consuming water, a spoonful of black seed oil and a shot of tumeric! (Do not try this at home!)
Please support this amazing human being x
please share x
www.justgiving.com/crowdfunding/hawksfastformasks?utm_term=D7zyAWzyQ ... See MoreSee Less

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Help raise £50000 to buy surgical masks for NHS frontline staff & to buy reuseable masks for the most disadvantaged in Africa whilst fasting no food for 40 days.

www.justgiving.com

Weʼre raising money to buy surgical masks for NHS frontline staff & to buy reuseable masks for the most disadvantaged in Africa whilst fasting no food for 40 days.. Support this JustGiving Crowdfunding Page.
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Thank you to you all. You guys are have been a true inspiration to me throughout the years. I've been blessed to be able to attend your events and see the remarkable work that you've done. P.s I love the chicken with mushroom sauce (I never liked mushroom sauce before) and I can't wait for this fast to finish to be able to feast at your next annual dinner dance. Hawks

The Butterfly AVM Charity

1 month ago

The Butterfly AVM Charity

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The Butterfly AVM Charity

2 months ago

The Butterfly AVM Charity
Hi Guys pleased to share with you the double cover of Blogosphere’s Issue 23 and I’m the first ever guest editor-in-chief of @blogosphere_magazine!! So grateful that I truly lived out my warrior princess fantasy. We are all Warriors! Especially In these uncertain times,we will fight & we will win,a brave heart will never be defeated x If you would like to read an in depth article about me featured in the magazine please click on the link. https://www.blogosphere.biz/issue-23/ #Blogosphere #NikkiLillyImage attachment

Hi Guys pleased to share with you the double cover of Blogosphere’s Issue 23 and I’m the first ever guest editor-in-chief of @blogosphere_magazine!! So grateful that I truly lived out my warrior princess fantasy.
We are all Warriors! Especially In these uncertain times,we will fight & we will win,a brave heart will never be defeated x
If you would like to read an in depth article about me featured in the magazine please click on the link.
www.blogosphere.biz/issue-23/
#Blogosphere #NikkiLilly ... See MoreSee Less

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I can pre orders mine!! Can’t wait and congratulations 🥳 x

Beautiful Nikki! Congratulations!!

Go girl 😊x

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Instagram post 2267446411875810557_14441900738 Image for post 2267446411875810557_14441900738
Instagram post 2260375596151631152_14441900738 @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
Instagram post 2237275243751668375_14441900738 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
Instagram post 2232117763757128488_14441900738 #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 🎉💫
Instagram post 2192744888365708059_14441900738 #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.
Instagram post 2191466142291570018_14441900738 #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
Instagram post 2187729783466926354_14441900738 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!!!
Instagram post 2182786573434883407_14441900738 FUNDRAISER FRIDAY! . Tyser Girl’s Northumberland Coastal Marathon . In February 2020 Annabel and Emilia will take part in the Northumberland Coastal Marathon. . Please take a moment to read their story and to understand the story of their friend Amy. . Link in Bio
Instagram post 2178408800402617313_14441900738 @jamieoliver thank you for your continued support for our @nikkililly_ it is very much appreciated. The kindness you have shown will be remembered always.
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