Scottish charity Teddington Trust has announced a new name and look to usher in its next 10 years of service to those affected by the ultra-rare condition, xeroderma pigmentosum (XP)!
Teddington Trust was founded in 2012 following the diagnosis of co-founder Nicola Miller’s son, who was diagnosed with the condition at just 13 months.
The charity, which provides support both in the UK and internationally, has undergone an extensive review of its purpose and activities to refine its mission with help from beneficiaries.
Action for XP – Building a board for the future
Action for XP will continue to deliver existing services as well as incorporate activities from partner UK charity XP Support Group (XPSG), which is closing its doors after 22 years of service following the retirement of its co-founders Sandra and Steve Webb.
With new trustees Annette Dearmun, Flora Milligan and Ellie McGowan joining the Action for XP board from XPSG, the organisation will build on its services to include activities identified during the consultation period, such as research activities, programmes to support young adults and establishing a bereavement service.
Beneficiaries at the heart of the mission
Action for XP has five core charitable purposes spanning support, international knowledge sharing, furthering scientific understanding, disease education/awareness and ensuring inclusion and diversity across its operations. Through each of these purposes, the organisation is committed to keeping the voice of their community at its heart.
About xeroderma pigmentosum (XP)
Xeroderma Pigmentosum (XP) is an ultra-rare genetic condition that’s characterised by an extreme sensitivity to ultraviolet radiation (UVR), which affects fewer than 150 patients in the United Kingdom and equally low numbers around the world.
Patients with XP lack the DNA repair mechanism to repair damage caused to the skin by exposure to ultraviolet (UV) light, in particular UVA and UVB. Patients are at a 10,000-fold increased risk of developing skin cancer than the general population, often from at a very young age.
Around 30% of people with XP also develop neurological abnormalities, which can range from learning difficulties, hearing loss and eyesight problems to a loss of gross motor skills and mobility.