Sohana speaking at #WEDay UK on 9 March 2016

June 16, 2016richardLatest News

Sohana speaking at #WEDay UK on 9 March 2016

BBC News – The promise of gene editing

December 18, 2015richardLatest News

Sharmila Nikapota, the mother of a child with a rare genetic disorder, has high hopes for gene editing…read more

Two NEW projects funded!

November 18, 2015richardUncategorized

Lenticol -M Mesenchymal Stromal Cells engineered to express Collagen VII for the treatment of RDEB

Dr Waseem Qasim, Professor J McGrath, Francesco Dazzi

Further info A trial is currently underway to test the ability of fibroblasts to provide collagen VII in the skin of patients with RDEB. The trial will provide important information on the safety and feasibility of localised injections of engineered cells into the skin. We now want to prepare for a more generalised approach using bone marrow derived cells called MSCs. This project aims to develop reagents and to test gene engineering of MSCs. It will include production of lentiviral vector and testing in an animal model, using human skin grafts from EB patients.

Deep Sequencing Recessive Dystrophic Epidermolysis Bullosa Squamous Cell Carcinoma

Dr Andrew South (Thomas Jefferson University) and Dr Raymond Cho (Department of Dermatology, University of California)

Patients with recessive dystrophic epidermolysis bullosa (RDEB) frequently develop aggressive, life-threatening cutaneous squamous cell carcinoma (cSCC). Although mechanisms have been proposed to explain why patients suffer this fatal complication, testing such hypotheses requires knowledge of which mutations contribute to the development of RDEB cSCCs. Identifying the mutational landscape of RDEB cSCCs should provide critical insight on how a cancer can develop so quickly in the absence of lifelong sun exposure and DNA damage. Understanding such mechanisms should elucidate modes of prevention and early detection unique to these patients. An increasing number of chemotherapies targeting specific gene mutations are currently in clinical use or development, thus sequencing these cancers may match a known treatment to RDEB patients. This project proposes to sequence 30 RDEB cSCC tumors and matched germ line DNA. This project aims to find tractable therapy options or targets for future development, both clinically and experimentally.

Mirror Newspaper – Schoolgirl’s skin blisters and burns if mum hugs her

September 29, 2015richardLatest News

Guardian Newspaper – My fight to save my daughter’s skin

November 22, 2014richardLatest News


The Silver Butterfly Dinner 2015 raised over £522,000

May 22, 2013richardLatest News
The Silver Butterfly Dinner hosted and organised by the Sohana Research Fund at RIBA on 14 May 2015 raised over £522,000 for RDEB research.
100% of proceeds from the night go to research.

EBSTEM reported on BBC news 29 Nov 2013

September 10, 2012richardUncategorized

Sohana research Fund to be part of BGC charity Day for the second year on 11 September 2014

September 10, 2012richardUncategorized

ICAP Charity Day 5 December 2012

August 2, 2012richardUncategorized

Sohana Research Fund is proud to be a beneficiary of ICAP’s 20th Charity Day. ICAP Charity Day 2012 was held on Wednesday 5th December and raised £11 million worldwide, supporting 200 charities. This brings the total amount raised through ICAP Charity day, which started in 1993, to more than £100 million.

On Tuesday, 5th February, our celebrity supporter Damian Lewis joined representatives from Sohana Research Fund at an event at 10 Downing Street for the 20th ICAP Charity Day Cheque Reception hosted by Samantha Cameron. Also attending the event was ICAP CEO Michael Spencer, other charities and supporters, along with the ICAP Charity Day team. It was a wonderful occasion to mark 20 years of ICAP Charity Day.


This Morning – The girl whose skin blisters at touch

Watch the video

BGC Charity Day
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