Sohana Research Fund Silver Butterfly Dinner at RIBA

International eXcellence Magazine was privileged to be invited to attend the Silver Butterfly Ball at the Royal Institute of British Architects to raise money for the Sohana Research Fund. Sohana is a lovely 12 year old girl who was born with Epidermolysis Bullosa otherwise known as EB.
This condition means that even the slightest touch on your skin leaves you with severe burns and blisters. It is painful, debilitating and life threatening. The blisters occur everywhere that friction occurs, so the throat and joints are all affected.  Sharmila, Sohana's mother, spends every morning bursting Sohana's blisters with a needle to make them more bearable. Not a great way to wake up a child, every single day.
There is good news, recent research has opened up a possible cure or alleviation of symptoms for this disease. Professor John McGrath (Guys and St Thomas’s Hospital, London) and colleagues are performing genetic research that is showing some quite extra ordinary results. Along with Professor Katsuto Tamai in Osaka they are developing techniques to identify which cells in the bone marrow are important for repairing wounds in skin and the signalling mechanism that directs help to wounded areas. Clinical trials are being performed along with bone marrow transplants and these are showing hope for sufferers as well as improving our genetic knowledge further for other conditions.
The evening was superbly well organised with many of the top banks, successful business owners, fashion and media in attendance.  After we had all eaten Professor John McGrath gave a speech which was by turns funny and poignant as he took us through the procedure and hopes for this ground breaking genetic research. Sharmila also spoke beautifully of her support and love for her daughter and we all watched, with some trepidation, a video where Sohana explains a little of what life is like with EB and her hopes and dreams for the future. Sohana is cheerful, eloquent, brave and clever, but there is no avoiding the fact that this is a very painful and debilitating condition that affects her and 8000 others in the UK. This was followed by a long period of silence whilst we all considered just what EB would be like to live with, for ourselves, our children and most of all Sohana.
The trials are expensive but there is a very good chance of reaching a cure. What is needed is money to continue financing the research as very little funding is forthcoming from the government, whilst this us a very unpleasant ailment it affects only a few people and therefore attracts little of the government purse. There was a silent auction with prizes donated by many companies and then a Sotherby's auctioneer stepped up to coax a little more cash from the diners. He did not need to ask, the crowd were there to give, the bids were exceeding the value of the items listed by ten times. It was exciting to see the total race towards the first £100,000 in a matter of half an hour. As the money metre climbed and slowed short of the 100K a chap stepped up to the microphone and pledged to double the sum on the condition it reached the full £100,000 in the next 7 minutes. This electrified all the tables including ours which put heads together to raise the bid on anything to reach that magic figure. An old friend of mine raised his bid to 10k for one of the prizes kindly donated by Bentley Motors and the deed was done. The dinner was attended by just over 100 people and raised over £500,000, which is an impressive feat.
Every table there was doing the same thing and the metre now stood at £200K and continued to rise. Bravo to all and particularly the man who committed to doubling the sum at 100K, there's a chap who knows how to motivate people and pull money out for a good cause.
There is a video which explains the cause and how important it is far better than I do, in Sharmila and Sohana's own voices. Please watch it and contribute any little you can, because there is a real chance that this charming, funny and courageous girl could see a life free from pain.
The patrons of this fund are Damian Lewis and Sean Bean who also started up the Tongue Twister challenge which was used to raise awareness of EB and you can see more about this on the site. Benedict Cumberpatch and Sienna Miller are particularly sweet attempting this verbal challenge.
International eXcellence Magazine would like to thank Bentley Motors, Pinucci Shoes and Edge Retreats luxury villas for their kind and generous donations to the Sohana Research Fund raiser.
For more information and to donate: Sohana Research Fund: http://www.sohanaresearchfund.org/
See the tongue twister challenge here: https://www.youtube.com/user/SohanaResearchFund/videos
RIBA: https://www.architecture.com/