Press

Press Enquiries 

Laura Lomer: +44 (0)7595 449705, [email protected]

Alternative contact: +44 (0)7786 805874, [email protected]

In The Press

2021

• 18 Nov, The Times – Mission EB launch: Football dream of boy with rare ‘butterfly’ skin disease
• 1 Oct, The Sun – Damian Lewis urges fans to sponsor mum running London Marathon
• 4 April, BBC Radio London – Sharmila Nikapota appeared on Gaby Roslin’s show talking about her marathon a month challenge.

2020

• 10 Dec – Sir James Dyson donates libel payout to Cure EB
• 7 Dec, Islington Gazette – Islington mum runs third marathon in three months to help heal her daughter’s skin
• 8 March, The Sun – Meet the UK’s 50 most inspirational females on International Women’s Day
• 4 Feb, Flyaway Books – Release of Binkle’s Time to Fly in America

2019

• EB World Congress 2020
  https://ebworldcongress.org/get-to-know-our-partners-cure-eb/
• Skin Disease Researchers Win Renewed Grants
  https://news.cuanschutz.edu/news-stories/skin-disease-researchers-win-renewed-grants

2018

• CU Anschutz scientists awarded $3.8 million Department of Defense grant
  String of major recent grants underlines promise of new potential treatments for Epidermolysis Bullosa and other chronic skin wounds (source: eurekaalert.org, April 12th 2018)
• First Patient Dosed with Dystrophic Epidermolysis Bullosa Treatment, KB103
  Krystal Biotech announced that the first patient has been dosed in the Phase 1/2 clinical trial of its drug, KB103, for the treatment of dystrophic epidermolysis bullosa (DEB) (source: www.raredr.com, May 10th 2018)
• Researchers discover cause of aggressive skin cancer in RDEB. Scientists at the Sidney Kimmel Cancer Center at Jefferson University have discovered the cause of aggressive skin cancers in Recessive Dystrophic Epidermolysis Bullosa (RDEB). Click to see report from Jefferson University
• We’re pleased to announce that Cure EB is joining three other EB charities to fund the clinical development of a new anti-fibrotic drug called TXA127. Read press release from Constant Pharmaceuticals.
• PR Newswire – Cure EB collaborates with three other EB charities globally to fund an anti-fibrotic drug 
• BBC Three ‘Living Differently – Me and My Butterfly Skin’ A short film (7:49) about Sohana’s daily life with RDEB

• In August 2018, Cure EB received an incredible £80,000 cheque from the Phoebe Research Fund. Rutland & Stamford Mercury article | Peterborough Today article
• The Sun – ‘Help our Poppy’: Mum makes heartbreaking plea for daughter, 6, with rare, painful skin disorder to enjoy life like other kids
• Science Daily – Cause of aggressive skin cancer in patients with butterfly syndrome

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

• The 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 Time Magazine – The Possibility of a Miracle (PDF)
• The 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 

Twitter support