Where it all began...
Teddington Trust was initially founded in 2012 by Rebecca and Wilbur Stewart in response to the diagnosis of their nephew Eddison, then aged 13 months. It operated as an individual family run fundraising organisation aimed at raising awareness of XP and for funding to build Eddison his own indoor garden.
On completion of Eddison's wonderful new space, Rebecca and Eddison's Mum, Nicola, decided to build on the amazing support. Following the success the Trust has achieved it has now become a registered charity, allowing them to focus on large scale project work aimed at helping to improve the quality of lives of those affected by Xeroderma Pigmentosum (XP).
"Eddison and others like him remain the inspiration and motivation in all we do!" Nicola Miller
On completion of Eddison's wonderful new space, Rebecca and Eddison's Mum, Nicola, decided to build on the amazing support. Following the success the Trust has achieved it has now become a registered charity, allowing them to focus on large scale project work aimed at helping to improve the quality of lives of those affected by Xeroderma Pigmentosum (XP).
"Eddison and others like him remain the inspiration and motivation in all we do!" Nicola Miller
Meet Team Ted (our Trustees)
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Rebecca Stewart & Nicola Miller
Sisters and partners in crime we run Teddington Trust and have evolved and shaped it from its initial inception to what it has now become: a registered charity focusing on large scale project work and patient and family support. Very early on we shared a vision, and then ideas for significant projects that we felt we could deliver began to seed. Before long these ideas had grown legs and had turned into live projects. We work seamlessly together, complementing each other’s working styles and are creatively aligned so working together really isn’t work! We are committed to successfully implementing our existing project work and continuing to evolve future projects for the betterment of the global XP community and to providing practical support to families. Wilbur Stewart Wilbur is Rebecca's husband and founding party of the original Trust and is involved in guiding project direction as well as fundraising. "Being an outdoors person I was immediately struck by the impact of this condition, not only for our nephew but for the whole family, especially Nicola who is the main carer. I think people forget that a diagnosis of XP doesn't just affect the patient, but the whole family, so many issues like vitamin D deficiency, loss of fitness and mental health worries are a big concern for all. I am delighted to be involved in growing the Trust to its charity status and working towards reaching more with this condition with a strong focus on education, health and well-being" Denise Doms Denise recently retired from a long career with Kent County Council and her role as Specialist Teaching Adviser and has a wealth of experience in working with children and families affected by some of the most complex physical conditions out there. She has recent experience of supporting and guiding families who are entering and transitioning through the school process. In addition to providing us with a much valued sounding board, Denise's commitment to the Trust will allow us to strengthen the support we can provide to families going through the minefield of the education system, as well as offering us her extensive knowledge on Statutory Obligations and Equality Law which will make us more effective in our campaigning for improved access to Rights for XP patients. John Roberts John has been a supporter of Teddington Trust since its inception. He brings to the team of Trustees experience in strategic planning and delivery and risk management and a long history in working to develop young people through scouting and sports. "I first heard about Teddington Trust as a friend and it has since become dear to my heart as I see what it has done for young people. In my professional life as a leader at American Express and in my volunteer life as Group Scout Leader for 1st Heathfield Scouts, I work with people across the world to bring them together with shared aims and then to deliver on them to make a difference. Experience I look forward to drawing on to assist the trust to grow and develop" Project Partners & SupportersLinks to follow soon - under construction!
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