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Motion · S6M-08296 · 20 Mar 2023

DEBRA, Living with Butterfly Skin

Lodged by Brian Whittle Members' Business Motion 36 supporters

The motion

That the Parliament recognises the work of the national charity, DEBRA, and its continuing support for people with, or who are directly affected by, epidermolysis bullosa (EB), also known as "Butterfly Skin", including people affected in the South Scotland region; notes that DEBRA defines EB as a group of incredibly painful genetic skin conditions that cause the skin to blister and tear at the slightest touch; understands that people with EB have skin as fragile as a butterfly's wing, which is why it is known by that name; further understands that EB is the result of a faulty gene, which is passed through families and means that the skin cannot bind together; notes that this blistering and tearing not only happens externally, but can also affect internal organs, including the throat, and, in the worst cases, can be fatal; understands that there are currently around 5,000 people diagnosed with EB in the UK; congratulates DEBRA on its appeal, A Life Without Pain, for raising £65,000 at a charity dinner and sports quiz in Glasgow on 19 March 2023, for which many Scottish sporting celebrities gave up their time to provide their support; understands that DEBRA does not receive any statutory funding and relies on the income generated by its charity shops and fundraising activities in order to provide care and support for people with EB, as well as to fund pioneering research to find treatments and, ultimately, a cure for EB, and wishes DEBRA well with its work to raise awareness of this incredibly painful condition, and its drive to find better treatments and a cure.

Supporters (36)

Source: the Scottish Parliament motions and amendments record.