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DEBRA Members Join Our President To Raise Awareness of EB

DEBRA Members Join Our President To Raise Awareness of EB

DEBRA’s president Falklands veteran, Simon Weston CBE, is touring the UK with a live stage show about his life and experiences. DEBRA Members Veronica and Michael Pearson and their family joined him as VIP guests for the first performance.

During the show “My Life – My Story in My Words,” Simon will discuss his experiences of serving in the army during the Falklands War, when he suffered 46% burns to his body as he was injured in an explosion aboard HMS Sir Galahad. He’ll also mention that he is President of DEBRA and why he is working with us. Simon’s own experiences mean he has  a unique understanding of the impact of severe skin damage, chronic pain and constant itching – issues people with EB can face on a daily basis.

Veronica and Michael’s youngest child Daisy suffers from EB Simplex, which causes constant pain and lifelong disability. Three generations of the family – grandparents, parents, and siblings Joseph (17) and Daisy (13) – have been fundraising for DEBRA for over 10 years. They have raised over an amazing £50,000 to fund research into effective treatments and a cure for EB. Now the Pearson family are volunteering as Media Ambassadors for DEBRA and telling story in the local press to raise awareness of EB.

Veronica Pearson says: “We were excited to meet Simon, and thoroughly enjoyed his show. EB can be invisible to the naked eye. EB causes constant pain and walking any distance can cause severe blistering. As a family, we would give anything to take that pain away, which is why we are fundraising for DEBRA. We started fundraising for DEBRA when Daisy was one. We’ve raised approximately £54,000 so far and Daisy was shortlisted for Young Fundraiser of the Year in 2018. The local community has been amazing, supporting us over the years. DEBRA is entirely reliant on donations to carry out its work – that’s why it’s really important we carry on fighting EB, so that Daisy and all EB sufferers could eventually have a pain-free life.”

Simon Weston CBE said, "I want to use my role as DEBRA's President to raise awareness of EB, increase public understanding of the condition and improve the quality of life for people with EB here and now. As I work with DEBRA, I'm meeting more and more people with EB – it's always a real privilege. It was great to meet Daisy and her family and learn about their personal experience of life with the condition – their dedication to finding effective treatments and a cure for EB and helping others with the condition is awe-inspiring.”

Simon will be touring across the UK over the coming months.

Find a date near you!

If you would like to become Media Ambassadors like the Pearson family, and raise awareness of EB by sharing your experiences in the media, please register your interest today.

 

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