“There is something special in the atmosphere tonight. I can’t quite put words to it, but I can feel it. Whatever it is, I feel inspired.”

Sometimes it is difficult to put feelings into words, but the word ‘inspired’ seemed to be uttered a great deal during the Butterfly AVM 10th Anniversary Ball.

After a 3yr absence due to the covid pandemic, 600 guests from all walks of life gathered in support of this unique charity, which funds research into the rare, but debilitating condition of arterial vascular malformations (AVMs).

The undoubted love that was tangible everywhere in the huge ballroom of the Meridian Grand was clearly generated by the feelings of all those present for the young founder of the charity & sufferer of this dreadful disease, Nikki Lilly. For those who have not heard a great deal about Nikki, it is well-worth watching the award winning BBC documentaries, “My Life – Born To Vlog.” She really is a butterfly that has caused a storm…..of love!

Even though Nikki was too unwell to attend the 10yr anniversary Ball following another serious operation (her 98th!), she received two incredibly moving standing ovations during the evening. Her absence was certainly felt by all, but Nikki Lilly is clearly a phenomenon that has immense presence even when she is not in the room.

Previous Butterfly AVM events were sold out rapidly, so the 10th Anniversary Ball was held in this much larger setting to satisfy the huge demand for tickets. The impact on people who were attending this event for the first time is captured aptly by the opening quote.

However, it is worth paraphrasing the sentiments heard around the room during the evening.

“From what friends had told me, I expected the tasty food, great music, and packed dance floor, but I did not expect to shed tears and have my heart captured by the spirit of this enchanting charity.”

The event was inspiring from start to finish with a powerful speech from Nikki’s father George, an incredibly moving video with voiceover from Nikki & awards for our amazing fundraisers.

There were AVM sufferers in attendance from as far as Wales & Newcastle making long journeys to be part of this wonderful night.

There was a special award this year in memory of Tina Josephides, who sadly passed away, Tina along with her husband Andy did so much for the charity.

The inaugural winner was Elena Georgiou who had climbed Kilimanjaro, an amazing feat where her thoughts of Nikkis daily struggles drove Elena to reach the top & raise over £7000 in the process.

Questions are often asked about the proportion of funds raised by charities which actually go to their stated cause. For Butterfly AVM, the simple answer is every penny of it. This is because everyone who does anything for the charity, does so out of goodwill, kindness, and, yes, love. All members of the committee organising events are volunteers, the musicians, the host ((Marc Spelmann, the mesmerising magician from Britains Got Talent), videographers, DJ, florists, and anybody else invited to support the charity do so, without charge.

Being at an evening like the 10th Anniversary Ball, where guests are willing to part with their hard earned cash to support this charity, you can well-understand why so many talented people want to stretch out a hand; it just feels great to unite with others in a bond of kindness.

All this means that every penny donated goes into supporting the scientific research which is aimed at improving the lives of people suffering from this terrible disease.

Even though the charity is small, it’s collaborators are Great Ormond Street Hospital, University College Hospital, Royal Free Hospital, and the Francis Crick Institute. It has already donated a huge amount of money towards the research taking place in these world class institutions, and its members have vowed to continue their money raising efforts until a cure is found. Over £750,000 has been raised by the charity to date & The 10th Anniversary AVM Ball itself has to raised over £50,000 on the night to enable the researchers to continue their important work.

If you want to be one of the charity’s butterflies, please visit the Butterfly AVM website at

Nikki Lilly – The Butterfly AVM Charity

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