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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

1 week ago

The Butterfly AVM Charity

If you are a bit of a shopaholic What A better way to raise money for our Charity than to shop shop shop!

www.easyfundraising.org.uk/causes/butterflyavm/?q=butterfly%20avm&cat=cause-autosuggest ... See MoreSee Less

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The Butterfly AVM Charity Fundraising Ideas | easyfundraising.org.uk

www.easyfundraising.org.uk

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The Butterfly AVM Charity

1 week ago

The Butterfly AVM Charity

Liquid Embolic Agents for Endovascular Embolization: Evaluation of an Established (Onyx) and a Novel (PHIL) Embolic Agent in an In Vitro AVM Model ... See MoreSee Less

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Liquid Embolic Agents for Endovascular Embolization:...

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Download citation | Liquid Embolic Agent... | BACKGROUND AND PURPOSE: Embolization plays a key role in the treatment of arteriovenous malformations. The aim of this study was to evaluate an established (Onyx) and a novel (precipitating hydrophobic injectable liquid [PHIL]) liquid embolic agent i...
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The Butterfly AVM Charity

2 weeks ago

The Butterfly AVM Charity
Research Update. Why your contribution is so important! Today we highlight AVM researcher Fanis Michailides whose research is funded by The Butterfly AVM Charity. Earlier work carried out by Prof. Veronica Kinslers 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 AVMs that will benefit patients directly with definitive treatments.

Research Update. Why your contribution is so important!

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". ... See MoreSee Less

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The Butterfly AVM Charity

2 weeks ago

The Butterfly AVM Charity

A Small Charity with Big Dreams!

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The Butterfly AVM Charity is the first specific AVM charity in the UK.

www.butterflyavmcharity.org.uk

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The Butterfly AVM Charity

3 weeks ago

The Butterfly AVM Charity
Guys! Why not start 2020 by donating as little as you can regularly every month to our amazing Charity! It can cost no more than a Cod & Chips or a fry up! and be healthier! X Together we can and will make a change.. Please if you are baking a cake, climbing a mountain, jumping out of a plane, going sober,or have a few spare pence, please think of The Butterfly AVM Charity.. A small Charity with big dreams x Please share :) https://donate.justgiving.com/donation-amount?uri=aHR0cHM6Ly9kb25hdGUtYXBpLmp1c3RnaXZpbmcuY29tL2FwaS9kb25hdGlvbnMvYTYzMDViNTVkZTg4NDI1Mjk5ZGFhNmMyNjM0ZDBiZDI=

Guys! Why not start 2020 by donating as little as you can regularly every month to our amazing Charity! It can cost no more than a Cod & Chips or a fry up! and be healthier! X
Together we can and will make a change.. Please if you are baking a cake, climbing a mountain, jumping out of a plane, going sober,or have a few spare pence, please think of The Butterfly AVM Charity.. A small Charity with big dreams x Please share :)

donate.justgiving.com/donation-amount?uri=aHR0cHM6Ly9kb25hdGUtYXBpLmp1c3RnaXZpbmcuY29tL2FwaS9kb25... ... See MoreSee Less

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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.
Instagram post 2177595393474814043_14441900738 It’s “FUNDRAISER FRIDAY” Every Friday we will dedicate all social media platforms to those who have raised funds for our charity. We can’t wait to share your achievements, along with pictures and videos, with our followers. But we do need this content! Please email us at pr@butterflyavmcharity.org.uk If you are in this picture, message below and we will tag you in
Instagram post 2177070767363360987_14441900738 We are so proud "Nikki has been officially recognised at next month's British Academy Children's Awards, where she will become the youngest ever recipient of a Bafta Special Award." BBC . @nikkililly_ @bafta #butterflyavm #charity . Link in bio
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