The Niemann-Pick Research Foundation Black Tie Ball was held on 6th October 2012 at the Grand Connaught Rooms in Covent Garden, London. Over 400 people attended, with guests travelling in from all parts of the UK including Scotland and Cornwall. Particular mention should go to the Kreuder-Carringtons, who drove all the way from Germany! The evening started with a sparkling wine reception whilst guests browsed the Promise Tree and Silent Auction prizes. We are grateful to Bibendum Fine Wines for their generous donation of the wine for the reception. Before dinner, the charity’s Patron, Richard Bacon welcomed the guests and hosted a game of ‘heads and tails’. The guests were quickly whittleddown to 2, who shared the prize of 6 bottles of Prosecco. After an excellent meal (compliments to the chef, we have received loads of positive comments on the food), Richard made a speech about why he became involved in the charity, being inspired by how William copes with the many challenges he faces and wanting to help in any way that he could. He acknowledged the problems that rare diseases have in getting national support and therefore the importance of patient groups in providing research funding. David’s speech described NPC in more detail and why the NPRF was formed. He emphasized the Trustees determination to turn as much net fundraising as possible into research (in 2011 99.5%). He also described the four grants that the charity has currently made. Finally David explained the important role the charity plays in ‘joining the dots’ between clinicians, scientists and patients and emphasized the benefits of the SWAT team initiative.
Just before the auction, a short 4 minute video was screened which showed William with his friends recording a video of the song “Just the way you are”. The video was interspersed with more information and finally an expression of hope for the future. A copy of this video is available on the website and Facebook.
We are indebted to Chris Mills, our auctioneer, who ran the auction very efficiently and with a lot of humour. The auction was a real highlight for bidders and non-bidders alike. At the end of the auction the formal part of the evening was over. Tim Hunt provided the disco and had a full floor all night, playing some great tracks that expertly targeted the mature audience! Nearby the vodka luge was doing a roaring trade and the silent auction was a constant buzz of activity.
We are extremely grateful to all the people who contributed prizes for the auctions and the Promise Tree. There really were some fabulous prizes and this was reflected in the amount raised on the night. We are also immensely grateful to the organizing committee comprising Ann O’Neill (chair), Helen Catterall, Peter Winfield and Sue French. The tireless effort they put in was rewarded on the night; lots of compliments received from guests. Finally we would like to acknowledge the tremendous contribution played by Richard Bacon. He injected enthusiasm, humour and professionalism to proceedings. His speech clearly showed the time he had devoted to finding out about the condition.