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Staying out of the shade…


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1st UK Genetic Disorders Leadership Symposium – Overview

Earlier this month I was very pleased to be able to represent Teddington Trust at the 1st UK Genetic Disorders Leadership Symposium. http://www.geneticdisordersuk.org/supportgroupsandcharities/geneticdisordersleadershipsymposium

This was a very inspiring session with a wonderful mixed agenda with an opportunity to learn from and hear experiences from other small charities and non-for profit groups operating for the benefit or various rare diseases. There were also some very interesting presentations from various medical and healthcare bodies.

I understand that the full audio and power point presentation will be available in due course, however in the meantime I thought it might be useful to feed back a few interesting links.

There was a very interesting presentation to kick start the event from the Clinical Lead for The 100,000 Genomes Project (England). This is a programme carrying out full genome sequencing with the view of achieving better diagnosis for rare genetic conditions and pioneering research. I was thrilled to see our own XP Clinical Geneticist’s photograph on the presentation in the Team Photo so wonderful to see XP featuring in this wonderful programme. If you are interested in reading a bit more check out the following link:

http://www.genomicsengland.co.uk/the-100000-genomes-project/

For those families with school age children  who may be currently embroiled in the SEN process of statementing or Education, Health and Care Plans there was a very interesting presentation and you will be interested to learn that there is an independent helpline for special educational needs. SOS!SEN.

SOS!SEN offer free, friendly, independent and confidential support for parents and carers of children with special educational needs. You can contact the directly at the following:

www.sossen.org.uk

020 8538 3731

Facebook SOS SEN, Twitter SOS_SEN

And for when matters cannot be resolved and further guidance is needed there are legal services out there who specialise in such matters. For ex. Maxwell Gillott, Helpline 0808 1293320, to name a few they can: advise on how to secure appropriate SEN provision, draft appeals and make representations at tribunals.

 

Lastly, there was a fascinating presentation from Professor Bobby Gaspar on the achievements of gene therapy to date and its potential for the future. There was nothing specific to XP, but it was generally hoping giving to see the current developments and we look forward to discussing this in clinic at Eddison’s next appointment.
We will try and capture these useful links on our webpage when we refresh it this month, but hope this helps in the meantime.

xx

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BREAKING NEWS! Big News Day for Teddington Trust

We are thrilled to share our BIG news today!

Teddington Trust has now achieved Registered Charity Status and has become Incorporated as a Scottish Charitable Incorporated Organisation (SCIO) – Charity Reference No: SC045465

 Our 3 key objectives and charitable purpose are encapsulated by Health, Wellbeing & Equal Rights being:

  •  The advancement of education;
  • Provision of recreational facilities, or the organisation of recreational activities with the object of improving the conditions of life for patients and families affected by XP; and
  • Promotion of equality and diversity.

Over the coming few weeks we will undergo a period of transition as we refresh our facebook, twitter and website and we will share much more information on our very detailed strategy for the coming year, setting out our Trustees, Aims/Objectives and update on Ongoing and Future Projects.

To celebrate this wonderful news, it seemed fitting that we also share the next installment of our special Little Ted Project which is very close to our hearts, and so tonight we are pleased to launch our new Little Ted facebook page https://www.facebook.com/LittleTedAdventures which will become and online hub for this project and give us a forum for sharing Little Ted news from his new Loving Companions around the world! Please check this out, LIKE & SHARE to follow the next steps in the Little Ted Adventure!

If your child is eligible and has received their own Little Ted book and bear pack and are already a Little Ted Companion we would love you to share any pictures, feedback or news via his page.

From tonight you will also be able to download our Little Ted books which will be available to ALL to download for FREE suitable for e-reader, ipad,  kindle, mobile etc. (any donations can be made via the link provided if you wish and all proceeds will further the Little Ted Project). This will allow us to reach more children affected by XP as well as allowing families to share these with friends, family, nursery and school settings and raising awareness with a wider audience.

You can access these directly from Little Ted’s facebook page https://www.facebook.com/LittleTedAdventures or by clicking below.

Little Ted

Little Ted Goes…

We would love to hear your feedback, and we thank you as always for joining us along this extraordinary journey and we look forward to sharing lots of exciting developments over the coming months as we take Teddington Trust forward on our new adventure.

Lots of Love

Nicola & Rebecca

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And all at Team Teddington x x