Thomas Bennett and Jody Latham are raising money for children with Epidermolysis Bullosa (EB), an incurable genetic skin disorder that causes the skin to constantly blister and tear.

Butterfly Children endure a life of extreme pain and battles to keep on top blistering skin and infection. EB is life-debilitating and can be life-limiting.

Tom and Jody are raising money for research into future cures and palliative care, by enduring the 32nd Marathon Des Sables 2017, a 156 mile Ultra Marathon in some of the hottest most hostile conditions on the planet... all while carrying the equipment and food needed for the duration.

The Charity
Keratoderma.org is a fund-raising project set up to provide support to patients and their families who have rare skin diseases, known collectively as keratoderma.

This initiative was brought about by the work of Professor Irwin McLean and his team at the University of Dundee in developing therapies for rare skin disorders. Whilst there are a number of existing support groups available to patients with common skin disorders, there is no support for patients and their families who cope, on a daily basis, with uncommon skin diseases.

Worldwide, keratoderma affects about half a million people; currently there are no effective therapies for the majority, if not all, types of the skin disorder. However, there is hope.

Due to the hard work and skills of the scientists and clinicians, research continues within the McLean Group and, along with a small team of international collaborators, work is ongoing to develop, new treatments and therapies.

One of the key areas of research is the ability to “switch off” faulty genes without affecting the normal copy of the gene. This sounds simple but only ten years ago, this would have been impossible.

With new technological advances over the last few years, this type of science is ground-breaking and could be the breakthrough for keratoderma skin diseases.