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

News

24 May 2021

The Royal Free & UCL AVM Research Programme Update

Read more
9 December 2020

We did it!

Read more
8 December 2020

Research that we are funding at The Francis Crick institute

Read more
10 July 2020

Support us via Amazon Smile

Read more
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

Posts navigation

Older posts

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

    3 weeks ago

    The Butterfly AVM Charity

    Woman with ‘visible difference’ has an amazing voice, and Billie Eilish agrees ... See MoreSee Less

    Link thumbnail

    Woman with ‘visible difference’ has an amazing voice, and Billie Eilish agrees

    www.yahoo.com

    Nikki Lilly has a rare medical condition called AVM, which affects her appearance. She’s using her platform to explore the things she loves like singing, makeup, and more.
    View on Facebook
    ·Share

    Share on FacebookShare on TwitterShare on Linked InShare by Email

    • Likes: 27
    • Shares: 3
    • Comments: 0

    Comment on Facebook

    The Butterfly AVM Charity

    1 month ago

    The Butterfly AVM Charity

    We wanted to highlight the amazing Elena Georgiou who is climbing Mount Kilimajaro to raise money for our Charity. Thank you so much. you are a star x
    If you are thinking of taking on a Challenge please spare a thought for our Charity... Together we can really make a change

    This is her story.

    "On October 9th I will be setting off to embark on a a great challenge to climb Mount Kilimanjaro. Kilimanjaro is the tallest mountain on the African continent and the highest free-standing mountain in the world. The climb will take 9 days of blood, sweat and most definitely tears!

    I am proud to be raising money for an amazing charity close to my heart, The Butterfly AVM Charity. This charity was introduced to me through family and I have since been a very proud supporter of Nikki Lilly who suffers from AVM herself. At the age of 17 she has accomplished things people don't do in a life time. She has been and continues to be an inspiration to so many including myself. Her ambition and courage is one of the reasons I have the strength to undertake this journey."

    www.justgiving.com/fundraising/elenageorgiou18     ... See MoreSee Less

    Link thumbnail

    Elena's Kilimanjaro Climb

    www.justgiving.com

    Help Elena Georgiou raise money to support The Butterfly AVM Charity Limited
    View on Facebook
    ·Share

    Share on FacebookShare on TwitterShare on Linked InShare by Email

    • Likes: 9
    • Shares: 2
    • Comments: 0

    Comment on Facebook

    The Butterfly AVM Charity

    3 months ago

    The Butterfly AVM Charity

    Freddies Story x
    Freddie’s AVM is in his brain and 2 years ago he had radiosurgery to treat it. Treatment is potentially ongoing and Freddie has been so very brave, having to deal with the hospital visits, scans and worries about what might be happening in his head. We are truly touched and inspired by the Freddies bravery. He is an inspiration to us all and despite all his problems he is raising money for our Charity by running 40k in 4 weeks! Please help him reach his goal. Together we can make a change.

    www.justgiving.com/fundraising/rebecca-jones223     ... See MoreSee Less

    Link thumbnail

    Freddie runs 40K in 4 weeks

    www.justgiving.com

    Help Rebecca Jones raise money to support The Butterfly AVM Charity Limited
    View on Facebook
    ·Share

    Share on FacebookShare on TwitterShare on Linked InShare by Email

    • Likes: 3
    • Shares: 3
    • Comments: 0

    Comment on Facebook

    The Butterfly AVM Charity

    3 months ago

    The Butterfly AVM Charity

    Thank you Andreas for your consistant support for our Charity x

    www.justgiving.com/fundraising/andreas-evangelou5     ... See MoreSee Less

    Link thumbnail

    Andreas's page

    www.justgiving.com

    Help Andreas Evangelou raise money to support The Butterfly AVM Charity Limited
    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

    4 months ago

    The Butterfly AVM Charity

    The Butterfly AVM Charity is proud to highlight the brilliant work done by the Research Team that we are funding at The Royal Free and the University College London. Their research focuses on AVM angiogenesis. This is a normal process in the body’s replacement of damaged tissue, but it can also occur under abnormal mutational conditions and leads to AVM growth and recurrence after treatment. This is demoralizing for both the patient who often has to undergo recurring potentially dangerous treatments and the surgeon or interventional radiologist who have to repeat treatments after regrowth and expansion. The goal of this research is to understand the process required for this revascularisation to occur and to identify biomarkers and screen drugs that can potentially stop and reverse this growth. This research could not have been done without the amazing fundraisers. Thank you x Together we can make a change.

    www.butterflyavmcharity.org.uk/the-royal-free-ucl-avm-research-programme-update/     ... See MoreSee Less

    Link thumbnail

    The Royal Free & UCL AVM Research Programme Update - The Butterfly AVM Charity

    www.butterflyavmcharity.org.uk

    The Butterfly AVM Charity is proud to highlight the brilliant work done by the Research Team that we are funding at The Royal Free and the University College London. Their research focuses on AVM angiogenesis. This is a normal process in the body’s replacement of damaged tissue, but it can also oc...
    View on Facebook
    ·Share

    Share on FacebookShare on TwitterShare on Linked InShare by Email

    • Likes: 12
    • Shares: 6
    • Comments: 1

    Comment on Facebook

    Jenny EM 🦋

    Follow us on

    Follow me on Twitter

    Tweets by @Butterfly_AVM

    Follow us on

    We are pleased to announce the latest update from We are pleased to announce the latest update from our research programme. . Please clink link in bio to view details
    From all us at The Butterfly AVM Charity have a Me From all us at The Butterfly AVM Charity have a Merry Christmas & a Happy New Year🎄enjoy your day x #merrychristmas #merrychristmas2020 #butterflyavmcharity
    Let’s get to £20k!! Link in our bio takes you s Let’s get to £20k!! Link in our bio takes you straight to the donation page of our website 🦋 #butterflyavmcharity #charitynight #zoomevent #donate #donations #nikkililly
    WOW! Thank you all so much for your support 💙 W WOW! Thank you all so much for your support 💙 We hope you’re having as much fun as we are tonight! @iamspelmann what an amazing show, along with a challenging quiz by @nikkililly_ And now for some more @djtonyperry with the tunes 🎶🎶 #butterflyavmcharity #charity #charityevent #zoom #zoomnight #nikkililly
    How amazing was that! @iamspelmann that is amazing How amazing was that! @iamspelmann that is amazing!! @cmbdmc is so confused!!!
    WE ARE LIVE!! With @djtonyperry on the decks getti WE ARE LIVE!! With @djtonyperry on the decks getting us warmed up 🎶🎉🍾💃🏽🕺🏽 Are you watching? #butterflyavmcharity #zoom #zoomevent #nikkililly #charityevent
    Almost ready!!! @djtonyperry are you ready?!? Almost ready!!! @djtonyperry are you ready?!?
    Tonight’s the night! Tickets can be purchased di Tonight’s the night! Tickets can be purchased directly via the link in our bio 🦋 Please share this post to support our wonderful charity and get everyone involved in tonight’s special event! #butterflyavmcharity #butterflyavm #charity #charitynight #nikkililly #donations #prizes #quiznight
    Huge THANK YOU to all our amazing sponsors for eve Huge THANK YOU to all our amazing sponsors for everything you do to support our charity 👏🏼. For more information about tomorrow’s event click the link in our bio, have you bought your ticket yet? #butterflyavmcharity #charity #zoomevent #nikkililly #avm #awareness #donations #prizes
    Follow on Instagram
    Copyright Butterfly AVM Charity © 2020 | All rights reserved | Privacy Policy
    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.
    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.
    SAVE & ACCEPT
    • About
    • Team
    • AVMs
    • News
    • Nikki Lilly
    • Fundraising
    • Shop
    • Contact
      • Treatment Centres
      • Back