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9 December 2020

We did it!

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8 December 2020

Research that we are funding at The Francis Crick institute

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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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    The Butterfly AVM Charity

    2 weeks ago

    The Butterfly AVM Charity

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    The Butterfly AVM Charity

    1 month ago

    The Butterfly AVM Charity

    www.parikiaki.com/2020/12/butterfly-avm-charity-virtual-event-raises-over-23000/ ... See MoreSee Less

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    Butterfly AVM Charity virtual event raises over £23,000

    www.parikiaki.com

    Who knew that we would have had to cancel the annual Butterfly AVM Charity Ball this year as a result of a global pandemic. It was for this reason that the charity’s committee felt the need to try …
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    The Butterfly AVM Charity

    1 month ago

    The Butterfly AVM Charity
    PlayThe Lost Teams PS5 Charity Fundraiser.

    Some of our trusted fundraisers are raising some money for the charity this Christmas by doing a PS5 raffle! The LostTeam (Luke, Jono and Ollie) are giving away a brand new PS5 and will be delivering it before Christmas day!!! To enter, buy your raffle tickets on their website: www.lostteam.shop/shop and follow the instructions on their instagram page @lostteamhq. Good Luck and Merry Christmas! ... See MoreSee Less

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    The Butterfly AVM Charity

    2 months ago

    The Butterfly AVM Charity

    The Butterfly AVM Charity updated their business hours. ... See MoreSee Less

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    The Butterfly AVM Charity updated their business hours.

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    The Butterfly AVM Charity

    2 months ago

    The Butterfly AVM Charity

    My Name is Lewis Hardy & I am setting up a just giving page to raise awareness of AVM in memory of my brother victor

    Me & my family were on holiday back in Aug & 3 days in.. we got a phone call.. my brother had suffered a major brain aneurysm.. resulting in him losing his life.. we later found out he had a brain AVM.. basically a ticking time bomb & they believe he had it from birth...I love & miss him so much.. he leaves behind a wife & 3 kids.. life is so cruel sometimes... & I would love to just give something back & make people aware of brain AVM (Arteriovenous Malformation)...thank you for listening any donations would be much appreciated & will be going to the butterfly AVM charity..

    Many thanks Lewis

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    Lewis's page

    www.justgiving.com

    Help Lewis Hardy raise money to support The Butterfly AVM Charity Limited
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    Good for you Jen. I have only just found out about this charity. 👍🤗🤗🤗❤❤

    Hiya Lewis. We will see what we can do. My husband also had a brain AVM. He was always thought to be epileptic and was treated for that. Sometimes very badly. I havevonly ever seen him have a grad mal seizure 5 times. They stopped in 1994. In early 2003 he begain having excruciating headaches so many times he was summarily dismissed from his job due to absences. His gp sent him for a brain scan at the Walton Centre Hospital for Neurological Excellence at Aintree wher an AVM was found near the optical cortex. He was received gamma knifec steriotactic radiotherapy. The orocedure took two years to plan. He was home next day. He was warned that he would develop a cerebral oedems which he has He also has different types of headaches and central brain pain as well as ME. The Walton still look after his medication which is very little. Still has to take Epilim just in case of risk of seizures and also to protect the lining of the brain. He is medically retired now and plodding along. Still wandering up.the Lakeland fells. The Walton Centre also treat me for CRPS. Gareth's treatment was just over 13 years. If it hadnt been for the wonderful.folks at the Walton and Royal Hamllamshire at Sheffield, I have no doubt that he wouldn't be here today. Not a day goes by without thinking how lucky we are. My 23 year old lad has a dad. He very nearly didnt. Sendingnour live and orayers to you. Anybody eith any knowledgenor experince if this horrible condition is welcome to contact us. There should be more awareness of brain AVM. Good luck🤗🤗👍🙏

    Sending our love and strength to you. I recently did an event to raise money for the charity because my husband also had a brain AVM at age 30. He was very very lucky due to swift medical intervention. We also have 3 children. 💞💞💞

    I had a brain AVM from birth but only found when I was 17 when I had brain haemorrhage. Had several rounds of gamma knife radiation treatment and after twenty years of treatments, in 2017, I was given the all clear finally. Few seizures, one stroke, three haemorrhages later!

    My son has a spinal AVM which was treated with cyberknife a couple of weeks ago. (He’s 23) It will take at least several months for the AVM to completely wither away. I’m so sorry for your brother. We too have raised money for this charity. X

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    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
    Have a look at some amazing new prizes you could w Have a look at some amazing new prizes you could win in tomorrow’s prize draw! Huge thanks to @aoiastudio @koupeslondon @iam.yodi @luxcess__ and @nikkililly_ for your donations 👏🏼👏🏼 Head over to our website to buy your prize draw tickets! Link in bio #butterflyavmcharity #zoom #zoomevent #nikkililly #charitynight
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