Previous Events


Cure EB Butterfly Run at Queen Elizabeth Park – 22nd September 2019

Silver Butterfly Dinner at the Royal Institute of British Architects – 16th May 2019



Butterfly Brunch Club in Conversation with Mishal Husain and Hadley Freeman – 29th November 2018

In the stunning setting of the Zaha Hadid designed Magazine Restaurant in Kensington Gardens, Cure EB supporters enjoyed a three-course lunch with fizz, and fascinating conversation from the BBC’s Mishal Husain, with the Guardian’s Hadley Freeman.

Cure EB Butterfly Run – 30th September 2018

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GFI Charity Day 2017

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Parallel London 2017 – 3rd September 2017


Vitality 10k – 29th May 2017

RIBA – Silver Butterfly Dinner – 18th May 2017

Virgin London Marathon – 23rd April 2017

Sohana with her dad James after he finished the 2017 London Marathon

Family Day 2017

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SRF Butterfly Brunch Club 2017

Click to learn more about hosting your own Butterfly Brunch Club

Please click to expand the boxes below to see our events from previous years!

[accordion title= “2016”]

Cadogan Hall Concert – 7th December 2016

Baroque Concert Fundraiser – 12th May 2016

SRF recorder concert 2016

Tom’s cycle round the World for SRF

Tom’s Web Site

The Guardian – Teenager completes round the world cycle trip


[accordion title= “2015”]

RIBA -Dinner May 2015

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RIBA Dinner

Virgin London Marathon April 2015

SRF Update – Christies Jan 2015

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SRF Drinks at Christies Jan 2015

Sohana wins a Prime Minister’s Points of Light award

Sohana wins a Pride of Britain award – 2015

Sohana’s Tongue Twister Challenge – 2015

[btn link=”” color=”steelBlue” size=”size-xl”]Sohana’s Tongue Twister Challenge ⇢[/btn]

Channel 5 News – Celebrities lend support to girl with agonising skin condition


[accordion title= “2014”]

Danielle de Niese In Concert at St John’s Smith Square 24 June 2014

SRF Danielle de Niese Concert

Virgin London Marathon April 2014

Marathon group


[accordion title= “2013 and earlier”]

Concert of Russian Music at Cadogan Hall 7 December 2013


EB Awareness Week 25-31 October 2013

SRF binkybus Binky downing st Binky at downing st Binky -prof on bus Binky-signing Binky -Guys Binky at GOSH

BGC Charity Day 11 September 2013


Silver Butterfly Dinner 9 May 2013 RIBA

raised £340,000

riba 1 Riba2 Riba 3 Riba 4

Virgin London Marathon 2013

Liz and sohana post marathon

Skyloft, Altitude Tower, Update Evening 26 Feb 2013


ICAP cheque presentation at Downing Street Feb 2013


ICAP Charity Day 5 December 2012

Sean Bean Gillian anderson ICAP Countess of Wessex Bill Nighy with me ICAP

Cello Recital by Armand Dangour and Champagne Reception

Raised  12,750-00

Royal Parks Half Marathon

Chris and Cathy Pitcher –

Arle Capital  half marathon team –

Three Bridges Walk

Total including offline donations £3,125

 London to Paris Cycle Ride 2012

(Andrew Cole and David Casterton)

Virgin London Marathon 2012

(Annabelle Wheeler, Steven Major, John Wood and Dave Mansfield)

Three Peaks Challenge 2012

Rachel Hart

Downing Street Reception March 2012


House of Lords Silver Butterfly Dinner 1 December 2011

Silver Butterfly Dinner 12 May 2011

Film screening  Feb 2011

Film screening 1 November 2010