teddington trust

Staying out of the shade…

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TT working with XPSG (UK) – Sisters are doin’ it for XP!

Last week was a very busy week for us, as Teddington Trust sisters Rebecca and Nicola got together for a frantic 4 days, darting here and there to make the most of a fleeting window of time together on Teddington business. 

Tuesday saw us meeting with Kerstin & Maude of Canterbury Bears (our Little Ted Manufacturer) followed by Jane of Parkers Design and Print (our Little Ted book printers) to discuss Phase 2 of Little Ted and other ideas in the pipeline.

Wednesday was a visit to St Thomas to visit the team who run our exceptional National XP Clinical Service to discuss the direction of our group, our projects and further collaboration with them.

Then in the spirit of this collaboration on Thursday we made the journey up to Great Missenden to meet with sisters Sandra Webb and Angela Verley of the UK XP Support Group. Sandra has guided the XP Support Group for over 10 years and in an attempt to step back a little has been carrying out some re-structuring of the group.

To this end we are very proud to have been be asked to take over the day-to-day Family Liaison role previously fulfilled by the Support Group.

Moving forward this means that Teddington Trust will be responsible for delivery of the following family liaison functions:

  1. Responding to patient & family enquiries;
  2. Producing and distributing patient & family literature;
  3. Education & wellbeing progammes and guidance;
  4. Dispatch out of UV film to patients; and
  5. Dealing with patient UV Grant Applications as appropriate.


“We hope to make contact with all existing members over the coming weeks and months so we can get to know you and see if we can help in any way now or in the near future and hope the transition will be as seamless as possible.” 

You can contact us with any enquiries through the usual XPSG channels which will be diverted via their administration team to us, or directly to our team via support@teddingtontrust.com

This restructuring heralds an exciting time; the XPSG will concentrate on their flagship, award winning OWL Camp and other exciting ideas in concept, to bring families together, while Teddington Trust will continue with our global Projects in addition to this new Family Liaison role.

We very much hope that through collaboration and working very hard together we can achieve so much more for our patients and families affected by Xeroderma Pigmentosum both at home and internationally.

After all there isn’t a force much better in the world than two sisters working together and as two groups each run by two sisters – surely anything is possible!?

There is no outsider anywhere who wouldn’t appreciate or even envy the tremendous advantage that sisters have, if properly utilised, against all odds” (Susan Ripps)

Lots of Love

Nicola Miller & Rebecca Stewart (Sisters – friends & TT advocates!)

Teddington Trust (SCIO)
Charity Registration: SC045465

`Creative Lightbulb` FreeDigitalPhotos.net

`Creative Lightbulb` FreeDigitalPhotos.net

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A Little Clarity on The Minefield of Transferring Statements to Education & Health Care Plans!

The following is a useful link for anyone who currently has a child of school age with an existing Statement, due to transfer to an EHC Plan.  Take a few minutes to read up on what to expect from the process, timescale and bodies involved.


If you are experiencing any difficulties during this process please do get in touch and we will try and advise/help where we can.

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Meet the Team: Denise Doms

Since attainment of our registered charity status last month we have been doing lots of work in the background to reflect our status and future direction and over the coming month you will be seeing lots of changes and improvements which we hope will be really useful and welcome.

One very big change is that now as a registered charity we have a Board of Trustees and so we thought it would be nice to take the opportunity to formally introduce you to our Board and core Teddington Trust Team over the coming weeks!

Today we wanted to introduce our newest member of Team Ted – Denise Doms
Meet Denise Doms (Teddington Trust Trustee)


When we heard the news that this lady was to retire, we wasted no time in snapping her up, and we are so thrilled to have Denise Doms on our Board as our very own secret weapon. Many of you who follow our blogs will have heard this name before and will know what a wonderful ambassador Denise has been for Eddison and our family, and how passionately she has championed Eddison’s needs and been so influential in securing his mainstream nursery and school placements along with the necessary funding and adaptation work and supplementary services, and so we feel very privileged that at the time when this very hard working lady is starting her retirement she agreed to join us on our crazy TT journey!

About Denise:

“My name is Denise Doms: I am very recently retired, after having worked in education across Kent since I qualified as a teacher in 1974. 

From 1974 until 2001 I worked in East Kent, firstly as a full time primary school teacher and then, after my daughter was born, as a supply teacher across the primary and lower secondary ages. Once my daughter was safely settled at secondary school I returned to full time teaching and I was quickly promoted to the school’s SMT and to the role of SENCo – where I discovered a real passion for working with class teachers to ensure that the most vulnerable pupils were always fully included in all of the activities that school had to offer. 

In 2001 I moved into Central Services, working firstly as an Early Years Additional Needs Teacher and then for 5 years until 2010 as an Early Years SENCo (a job I really loved), before in 2010 taking on what was to become probably my most demanding and challenging role – that of Specialist Teacher supporting pupils (and their families) from birth to 25, who have complex physical and medical disabilities, and who attend mainstream schools and settings.  

As a part of that role I supported Eddison into nursery, through the Statutory Assessment process and then into school.”

Denise has a wealth of experience in working with children and families affected by some of the most complex physical conditions out there, and has current expertise in 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 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.

I hope you will join us in saying “Welcome Aboard Denise”, and if any families do have any concerns about current or future schooling issues, or want any practical support with the EHC Plans/Statement process please do get in touch and we will field your inquiry directly to Denise for her guidance.

All queries F.A.O Denise to support@teddingtontrust.com