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31.10.2014

'It's unreal': Story of Canadian boy with EB goes viral

DEBRA Canada's patient ambassador Jonathan Pitre has created international awareness with the launch of the EB Ambassador Wish Campaign.

DEBRA Canada launched their annual EB Ambassador Wish program in conjunction with the International EB Awareness Week 2014. The fundraising and awareness campaign focused on two Canadian EB patient ambassadors - Deanna Molinaro and Jonathan Pitre, both of whom have Recessive Dystrophic EB.

As part of the awareness outreach, the campaign was launched to local and national media. A very touching and impactful article (with video) was written by Ottawa Citizen journalist Andrew Duffy (and photographer Julie Oliver), highlighting 'a day in the life of Jonathan Pitre' and resulted in a viral wave on social media.

The article was viewed more than 594,000 times on the Citizen website and DEBRA Canada's inbox and phone (1-800 line) were flooded with emails and calls from people across the country and around the world who wanted to show their support for 'the most painful disease they had never heard of'.

Jonathan's story struck a chord with the hearts of thousands and within a short 3-month period, DEBRA Canada raised just over 117,000 Canadian dollars. In addition, the article spurred further media resulting in EB coverage/articles in over 30 media outlets (press, radio and TV) across Canada.

We can't thank our patient ambassadors enough for all that they have done to increase EB awareness across Canada and beyond.

Erin Hoyos, Project Coordinator and Administrative Officer, DEBRA Canada

Jonathan Pitre, with naked torso (wounded and with blisters), and his mother, against black background

Jonathan Pitre and his mother Tina Boileau