teddington trust

Staying out of the shade…

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

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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

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`Creative Lightbulb` FreeDigitalPhotos.net

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