Tom's Coast2Coast NZ for EB
Raising awareness of EB through my effort to complete the individual 2 day Kathmandu Coast to Coast Multisport event in February 2020.
Canterbury
We take so much for granted in our generally comfortable lives. Butterfly Children is a term often used to describe children with Epidermolysis Bullosa (EB), a rare genetic disorder that limits the body’s ability to form healthy skin, because their skin is as fragile as a butterfly’s wings.
DEBRA is a worldwide network of national groups working on behalf of those affected by the genetic skin blistering condition, EB.
Brave children and their families the world over rely on DEBRA to improve the quality of their lives through support and medical care. Click to donate and/or share this page to help make the lives of New Zealanders with EB just a little bit more comfortable.
Tom Rochford's involvement (page creator)
Through my work at ARANZ Medical, I have become aware of how challenging life is for people living with EB. I have set up this page to help raise funds and awareness.
Please donate and/or share this page.
Other page links
Latest update
A bold target has been set. 2 December 2019
$10 for every km of 'joy and pain'.
Latest donations
Thanks so much K&A. I hope you are both well.
Thanks so much Jo and Andy !! Much appreciated.
Thanks so much Gwin. Tom
Thanks so much Tim. Appreciate the support at work too. It means a lot.
Who's involved?
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