cure-eb.org

For Press Enquiries Contact 

Laura Lomer  +447595 449705   lomer@blueyonder.co.uk

Alternative contact : +447786805874  sharmila@cure-eb.org

 

 

2017

Daily Mail – The brave little girl in constant agony from Butterfly Syndrome

Express – Mother of little girl with rare condition: A gene trial helped my daughter walk

Report on Sky News re #GeneTherapy. Skin grafts for a young boy with junctional epidermolysis bullosa

 

 

2016

Sun – Brave boy has to be wrapped up like a mummy because the merest touch could cause his skin to FALL OFF

Sun – Meet the brave girl wrapped up like a mummy… because HUGS can leave her with serious burns

 

2015

ITV.com – GMB surprises three child heroes

BBC News – The promise of gene editing

Daily Mail – Our daughter suffers like no child should

BBC – Londoner Tom Davies, 19, becomes ‘youngest person to cycle the world’

ITV – British teenager could be youngest ever to cycle around the world

Guardian – Teenager completes round the world cycle trip

Express – Tears as Tom, 19, becomes ‘youngest to cycle the globe’

 

2014

Guardian – My fight to save my daughter’s skin

 

2013

Islington Gazette – 11-year-old skin disease sufferer from Barnsbury goes on awareness campaign

 

2012

Sunday Times Magazine – The Possibility of a Miracle (PDF)

Sun – Slightest touch makes our girl’s skin blister like she has third degree burns. It is heartbreaking

Islington Gazette – Young Barnsbury skin disorder sufferer meets Samantha Cameron at Downing Street

Here Is The City – debra to benefit from Goldman Sachs Gives gift 

 

2011

Standard – First find the funds, then we can find the cure 

 

 

2015 – Celebrities lend support to girl with agonising skin condition

 

Twitter support

YouTube Video – BBC Lifeline Appeal for DebRA

 

 

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