London, UK 1^st July 2023 – Scottish charity Teddington Trust announces new name and new look to launch its next 10 years of service to people affected by the ultra-rare condition xeroderma pigmentosum (XP).

Teddington Trust a Scottish Charitable Incorporated Organisation that supports individuals and families affected by the rare genetic disease xeroderma pigmentosum, launches its new identity today following a period of community engagement and reflection.

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 purposes and activities and, in consultation with beneficiaries, has developed and refined its mission to reflect these.

“Over the last ten years we have focussed on providing practical and emotional support in addition to well-being projects designed to bring our community together. Following consultation with our community we are excited to launch this new identity –Action for XP– which better reflects our mission as we build on our objectives for the next ten years and beyond.” Nicola Miller Co-Founder and Trustee.

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 closes its doors after 24 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 looks to build on their services to include activities identified during the consultation period. These include research activities, programmes to support young adults and establishing a bereavement service.

“At the heart of these changes is the desire to offer continuing support to the XP Community and evolve in response to changes in the needs of our beneficiaries and the landscape in which we operate.” Nettie Dearmun Chairperson XPSG, new trustee of Action for XP.

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 and awareness and ensuring inclusive and diversity across their operations. Through each of these purposes the organisation is committed to keeping the voice of their community at its heart.

“As a patient myself, I’m very much looking forward to working more closely with individuals directly and indirectly affected by XP. I welcome and encourage our community to engage with us frequently. This will allow Action for XP to ensure existing and future activities are impact driven and build on the fantastic progress to date of Teddington Trust and XPSG.” Richard Barlow Chairperson Action for XP

About xeroderma pigmentosum

Xeroderma Pigmentosum (XP) is an ultra-rare genetic condition characterised by an extreme sensitivity to ultraviolet radiation (UVR) which affects less 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 and are at a 10,000-fold increased risk of developing skin cancer than the general population, often from at a very young age. In addition, around 30% of people with XP also develop neurological abnormalities which can range from learning difficulties, hearing loss and eyesight problems to loss of gross motor skills and mobility.

For more information visit www.actionforxp.org

Contact

To arrange an interview with Nicola Miller, Richard Barlow or Annette Dearman please contact Rebecca Stewart on Rebecca@actionforxp.com

---