• About
  • Team
  • AVMs
  • News
  • Nikki Lilly
  • Fundraising
  • Contact
    • Treatment Centres
Donate Now Donate via

News

28 February 2020

Tyser girl’s Northumberland Coastal Marathon

Read more
5 February 2020

Research Update. Why your contribution is so important!

Read more
9 January 2020

Tom Dyer – Table Mountain

Read more
14 November 2019

Nikki Lilly Youngest Ever Bafta Special Award Winner

Read more
6 November 2019

The Butterfly AVM Charity Dinner and Dance 2019

Read more
6 November 2019

Nikki Lilly Speaking on ITV London NEWS

Read more
6 November 2019

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

Read more
6 November 2019

BREAKTHROUGH IN AVM RESEARCH!

Read more
16 September 2019

The boy was dying. Zebrafish helped save his life

Read more
7 February 2019

The Butterfly AVM Olympians

Read more

Sign up for our newsletter

Be alerted of news and great fund raising stories!

Follow us on

Comments Box SVG iconsUsed for the like, share, comment, and reaction icons

The Butterfly AVM Charity

4 days ago

The Butterfly AVM Charity
Play

It’s been sooo hard to keep this a secret but I can finally announce that i’m the cover star of Blogosphere’s Issue 23 and the first ever guest editor-in-chief of @blogosphere_magazine!! i have been a fan of Blogosphere since i was little, so to even have the opportunity to work with Blogosphere is a dream come true.I’m so grateful and I hope you love this issue as much as I do.I truly lived out my warrior princess fantasy,the front covers will be revealed next week and yes, those are real wolves!
We are all Warriors! Especially In these uncertain times,we will fight & we will win,a brave heart will never be defeated x
To pre-order magazine please click on the link.
www.blogosphere.biz/issue-23/ ... See MoreSee Less

View on Facebook
·Share

Share on FacebookShare on TwitterShare on Linked InShare by Email

  • Likes: 20
  • Shares: 3
  • Comments: 3

Comment on Facebook

Congratulations beautiful warrior ❤

Beautiful.❤️

❤️

The Butterfly AVM Charity

2 weeks ago

The Butterfly AVM Charity
Video image

m.youtube.com/watch?v=u-oL3YNlHiE ... See MoreSee Less

View on Facebook
·Share

Share on FacebookShare on TwitterShare on Linked InShare by Email

  • Likes: 2
  • Shares: 0
  • Comments: 0

Comment on Facebook

The Butterfly AVM Charity

3 weeks ago

The Butterfly AVM Charity

... See MoreSee Less

View on Facebook
·Share

Share on FacebookShare on TwitterShare on Linked InShare by Email

  • Likes: 0
  • Shares: 0
  • Comments: 0

Comment on Facebook

The Butterfly AVM Charity

3 weeks ago

The Butterfly AVM Charity

Thank you to Photis Callis who is taking part in the YMCA North London Fun Run & Festival, 3rd May 2020.
#ButterflyAVMCharity

www.justgiving.com/fundraising/photis-callis37 ... See MoreSee Less

Link thumbnail

Read Photis's story

www.justgiving.com

Photis is raising money to help The Butterfly AVM Charity Limited
View on Facebook
·Share

Share on FacebookShare on TwitterShare on Linked InShare by Email

  • Likes: 0
  • Shares: 0
  • Comments: 0

Comment on Facebook

The Butterfly AVM Charity

4 weeks ago

The Butterfly AVM Charity

Can you help Ellis Charalambous raise £2000 to The Butterfly AVM Charity.
#butterflyavmcharity
Please donate to their JustGiving Crowdfunding Page: www.justgiving.com/crowdfunding/ellis
chara123?utm_term=9GGQM5J4z ... See MoreSee Less

Link thumbnail

Help raise £800 to The Butterfly AVM Charity

www.justgiving.com

Weʼre raising money to The Butterfly AVM Charity. Support this JustGiving Crowdfunding Page.
View on Facebook
·Share

Share on FacebookShare on TwitterShare on Linked InShare by Email

  • Likes: 1
  • Shares: 1
  • Comments: 0

Comment on Facebook

Follow us on

Follow me on Twitter

Tweets by @Butterfly_AVM

Follow us on

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.
Load More... Follow on Instagram
Copyright Butterfly AVM Charity © 2019 | All rights reserved | Privacy Policy
Web design by
This website uses cookies to improve your experience. We'll assume you're ok with this, but you can opt-out if you wish. Cookie settingsACCEPT
Privacy & Cookies Policy

Privacy Overview

This website uses cookies to improve your experience while you navigate through the website. Out of these cookies, the cookies that are categorized as necessary are stored on your browser as they are essential for the working of basic functionalities of the website. We also use third-party cookies that help us analyze and understand how you use this website. These cookies will be stored in your browser only with your consent. You also have the option to opt-out of these cookies. But opting out of some of these cookies may have an effect on your browsing experience.
Privacy Overview

This website uses cookies to improve your experience while you navigate through the website. Out of these cookies, the cookies that are categorized as necessary are stored on your browser as they are essential for the working of basic functionalities of the website. We also use third-party cookies that help us analyze and understand how you use this website. These cookies will be stored in your browser only with your consent. You also have the option to opt-out of these cookies. But opting out of some of these cookies may have an effect on your browsing experience.

Necessary Always Enabled

Necessary cookies are absolutely essential for the website to function properly. This category only includes cookies that ensures basic functionalities and security features of the website. These cookies do not store any personal information.

Non-necessary

Any cookies that may not be particularly necessary for the website to function and is used specifically to collect user personal data via analytics, ads, other embedded contents are termed as non-necessary cookies. It is mandatory to procure user consent prior to running these cookies on your website.

  • About
  • Team
  • AVMs
  • News
  • Nikki Lilly
  • Fundraising
  • Contact
    • Treatment Centres
    • Back