Sohana Research Fund

Many celebrities support the Sohana Research Fund, including Jason Isaacs, Gary Kemp and Phyllida Lloyd, Johhny Vaughan and DebRA president Michael Portillo who gathered for the Silver Butterfly Dinner at Altitude Black in the Millbank Tower earlier in the year.
The SRF is dedicated towards funding research into an effective treatment or cure for RDEB and was set up by the parents of Sohana Collins, a brave and engaging 8 year old from North London who suffers from this devastating condition. It is part of DebRA, the only UK based charity for EB sufferers, which works tirelessly to help people with the condition. Despite having the severe genetic skin condition, called Recessive Dystrophic Epidermolysis Bullosa (RDEB), Sohana is a happy and positive eight year old. However, she is missing a vital cement in her skin making her incredibly fragile. This leads to skin loss or blistering at the slightest knock or rub. Both external and internal skin are affected, so eating is always painful and sometimes she is unable to see due to abrasions to her eyes. She copes with an exhaustive routine of having blisters lanced, being almost completely bandaged, hospital visits and constant pain. RDEB is incredibly cruel and Sohana's type (the most severe form) is progressive, debilitating and life-threatening. There is at present no effective treatment or cure and around 5000 people in the UK suffer from this horrific condition. Many people with the condition do not reach adulthood, and if they do their life expectancy is reduced by 30-40 years. Recently there have been major advances regarding stem cells and there is now real hope of an effective treatment and a possible cure being developed. The race is on to secure funding for a clinical trial here in the UK. Sharmila, Sohana's mother writes 'If you met Sohana, you would hear about her plans for the future, hear her sing her favourite songs, describe her favourite book. She maintains her sense of humour throughout and enjoys every experience from reading to music, colouring a picture to flying a kite. Her imagination sets her free and she lives her life with a zest that I marvel at. She doesn't complain, though her smile hides the yearning she has to 'get rid of EB' to stop the constant pain. When she dreams, she is free to dance, run, climb, jump, ride a bike, to fall on her back in the grass and laugh at the sun; without fear of permanent damage'. She is not the only one. Sharmila, explains, Watching your child endure daily, constant pain is heartbreaking. The charity DebRA has to find the great majority of the research funding and as a small charity, struggles for recognition. The future has been hard to contemplate, and yet the medical advances are now, so very promising. We need the stem cell trial to start immediately, which means raising the funds as soon as possible. Please help us address and fight this one, truly dreadful condition now.
To give to the Sohana Research Fund (SRF) please visit justgiving.com/SohanaResearchFund or telephone DebRA on 01344771961 quoting Sohana Research Fund. Alternatively, donate online at www.DebRA.org.uk, with a follow up email citing that the donation was towards the Sohana Research Fund.
The Sohana Research Fund (SRF) will be undertaking a number of events during 2011 to raise funds. To help, donate and for upcoming events and research information please visit The Sohana Research Fund face book page or call Laura Lomer on 0207 419 5669.
The Silver Butterfly Dinner raised £258,000 from many friends and supporters. This funding and a fantastic donation from a major investment bank means a clinical trial can start. This is a huge boost to the campaign to find an effective treatment for RDEB. The next few years are crucial. SRF totals soon. SharmilaFor further information please contact the Sohana Research Fund face book page, and take a look at the BBC Lifeline Appeal for DebRA