teddington trust

Staying out of the shade…


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Brick by Brick – Supporting Teddington Trust

We never know what calls and emails will come into our office, and recently we had one of our oddest to date! We were kindly being donated a LARGE quantity of LEGO compatible COBI bricks to use to raise funds for our work!

Now, all we had to do, was get our thinking caps on, to work out how we could use this for best return for the charity to help with our vital patient support and projects.

After much debate and brain storming, one of our close friends stepped in to offer assistance. Katrin has taken on the challenge to turn these bricks into fun novel items for sale, plus separating to sell as loose bulk bricks.

We also have a VERY special ONE OF A KIND, professionally built Sculpture which is available to buy as a stand alone item

See below links to the auction items and happy bidding!

OUR TT TOP PICKS

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http://www.ebay.co.uk/itm/Giant-alien-head-statue-made-from-Lego-compatible-COBI-building-bricks-/322459926873?hash=item4b141c0159:g:hZkAAOSwuxFY0mtT

 

Lego table.jpg

http://www.ebay.co.uk/itm/Table-made-from-lego-compatible-Cobi-Building-blocks-/322459218138?hash=item4b141130da:g:NUgAAOSwTM5Y0YMP

 

 

Lego planters.jpghttp://www.ebay.co.uk/itm/Kids-garden-planters-made-from-lego-compatible-building-bricks-/322459670730?hash=item4b141818ca:g:DYsAAOSwSlBY0YmF

 

You can view a full list of all auction items via this link, which includes bulk packs of individual bricks:

http://www.ebay.co.uk/sch/puppy1571/m.html?item=322459926873&hash=item4b141c0159%3Ag%3AhZkAAOSwuxFY0mtT&rt=nc&_trksid=p2047675.l2562

If you would like something you cant see, you can discuss your requirements with us directly support@teddingtontrust.com or everett.richard@sky.com

30% of all profits will be donated directly to Teddington Trust, allowing for time and storage costs.
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#BearsforRare

#BearsforRare is a long running charitable campaign launched in spring 2016 by registered charity Teddington Trust. The objectives of this campaign are to provide vital educational resources to patients affected by the ultra-rare condition of xeroderma pigmentosum, while rolling out a national in-school programme, delivering key messages on inclusion and rare disease.

“To bring public attention to the difficulties that those affected by rare disease face when accessing treatment and services, and given their aligned objectives, Teddington Trust were delighted to give their campaign name to SHIRE for this special one off day/campaign to launch their key white paper, bringing the patient voice to the forefront.”
Nicola Miller, Co-Founder Teddington Trust

To support the Teddington Trust #BearsforRare campaign visit
http://www.teddingtontrust.com/bearsforrare.html

Or #BearsforRarepost a picture of you and your favourite bear on social media with the hashtag #BearsforRare #Bears4Rare – Text Donate – Text BEAR20 £5 to 70070

#BearsforRare_London

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Jeans for Genes supporting Xeroderma Pigmentosum

Jeans for Genes Award Teddington Trust a grant for children with Xeroderma Pigmentosum

TEDDINGTON TRUST are delighted to announce that  we have been awarded a grant from Genetic Disorders UK, the national charity that organises the annual fundraising day, Jeans for Genes Day.

This generous donation will come from funds raised on the day and will be used to fund a special Project Breakaway – Activity Day for children and their families affected by Xeroderma Pigmentosum

“The condition of XP can be an extremely isolating one, and this grant will enable us to bring families together to enjoy activities as a group in a fun and safe way, building friendships, confidence and making wonderful memories” . Nicola Miller, Teddington Trust

JeansforGenes_logo

Xeroderma Pigmentosum is a rare genetic disorder that is characterised by the body’s inability to repair the damage to skin that is caused by ultraviolet light from the sun and most sources of artificial light. Children with xeroderma pigmentosum are 10,000 times more likely to develop skin cancer than the general population and so they must be covered completely at all times when they are outside.

Genetic Disorders UK’s Jeans for Genes Day is an annual fundraising event when school children and office workers wear their jeans in exchange for a donation to the charity. Although individually genetic disorders are rare, together they affect 1 in 25 children. This means that more than 30,000 babies each year are born in the UK with a genetic condition. Sadly, genetic disorders and their associated health problems mean that they are the biggest cause of death of children aged 14 years and under. Funds from Jeans for Genes Day are granted to specialised charities to provide care and support for children affected by genetic disorders.

Caroline Harding, the CEO of Genetic Disorders UK said: “We are delighted to be helping TEDDINGTON TRUST support children with the rare and complex condition of Xeroderma Pigmentosum. Our grant programme is open to all UK support groups and registered charities who work to improve the lives of children and families affected by genetic disorders.”

  • Jeans for Genes Day raises money for Genetic Disorders UK, a charity that provides much needed advice and support for individuals and families affected by genetic disorders. jeansforgenes.org
  • Jeans for Genes Day is an annual fundraising event held in September. School children and office workers are encouraged to wear their jeans for the day in exchange for donation. jeansforgenesday.org
  • Genetic disorders are caused by an alteration in DNA. This may mean that either a gene or several genes are missing, repeated or in the wrong order. Altered genes can affect a child’s senses, movement, ability to learn or appearance.
  • TEDDINGTON TRUST is a Jeans for Genes Day 2017 grant charity. They will receive a grant towards provision of a children’s breakaway/activity day.


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Meet our new Ambassador and volunteer Patient Services Coordinator (Midlands Region)

We are pleased to announce the latest volunteer member, Rehana Kauser who joins the Teddington Trust Team, as an official Ambassador and Patient Services Coordinator for the Midlands Area.

Rehana is the mother of 3 beautiful boys and lives in the Midlands area. Her oldest son, now aged 17 was diagnosed with XP aged 8 years old.

rehanaWe have many families located across the Midlands, of all ages and Rehana is excited to join our team to help us coordinate patient services across this region, allowing us to to effectively deliver high quality patient support direct to families.

Rehana will also be helping us bring a range of activities to this region to better connect XP families from within the region with other families across the UK.

 

Engaging patients and families directly, is a very important aspect of our work and allows us to ensure that our projects meet the needs of all. We are very proud to have an XP child, adult and now a parent represented in our Ambassadors.

We have a wonderful two years ahead with much in the planning and so it is an exciting time to join our volunteer team and have the opportunity to become directly involved.

If you would like to find out how you can be more formally involved in the work of Teddington Trust, drop us an email to discuss. Contact, Nicola on support@teddingtontrust.com 

 


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Celebrating People 2017– Teddington Trust New Years Honours

In 2016 we introduced our first ever New Years Honours, to acknowledge people who have contributed immensely to the work and services of our charity throughout the year, and who have gone above and beyond. It is our opportunity to say a special thank you to our supporters, without whom we could not deliver our projects.

The following, are people that have gone the extra mile to help us reach our charitable objectives in the last 12 months – here is our 2017 Honours Role Call.

New Years Honours List 2017

This year we want to acknowledge three individuals and a number of show-stopping teams.

First up, we are delighted to name Sue Myers in this years New Years Honours List.

sue2_jan2016Sue joined us over a year ago as a weekly volunteer in our Kent office, and she has been a highly valuable member of our team over the last year. Sue has helped us with administration tasks, packing up UV hats and gloves for patients and helped with planning local events. Sue also worked very hard on helping us create our latest fundraising book – DIG SOW GROW.

Sue has brought us many giggles and much fun on the Teddington Trust ‘Crazy Train’ and we would like to say a sincere and heartfelt thank you to Sue for her hard work and dedication. 

2016 was a BIG year for sporting achievements which brought in considerable funds to Teddington Trust. There are two stand out individuals who not only raised staggering sums but achieved quite incredible sporting feats, alongside raising awareness for TT and XP.

david

David Hamill has carried out a number of sponsored sporting events both individually and as part of a team over the years. This year David smashed the Berlin Marathon with a very admirable time and went on to raise an incredible £2447.33 with just this one event!

David has also helped us in other ways behind the scenes and been a constant supporter.

Thank you David for your continued love and support x 

 

paul

Like David, Paul Wilson has been with us, supporting us since we started and he has done this by running various length events. 2016 saw Paul take on his biggest challenge yet, when he took on the incredible – and completed an Ultra Marathon raising over £1,100.

An amazing sporting achievement from our ‘running man’ hero, so our big thanks and love for your amazing support Paul.

This year was also all about teams and we were very honoured to have a number of dedicated men and women come together to create an amazing `Team Teddington` in several extreme events. This year, we have three special teams who raised significant awareness for XP, funds for Teddington Trust and achieved awe inspiring times.

Image may contain: 7 people, people smiling, people standing, tree, outdoor and nature

First up Team Ted Illuminator. This team, lead by Rebecca Stewart, comprised Hannah Gelati, Sean Fraser, Cara Gelati, Nikki Dayton, Imogen and Ken Pearce walked through the night over rough terrain, and raised a wonderful £1763.77!

An amazing effort everyone – thanks you xxx

 

Next up our Team Ted Run Balmoral, Ali and Mouse Aboyne, Lucina Rider, Emily Salvesen, Laura Voor de Poorte and Rebecca Shannan ran, again with Rebecca Stewart and collectively raised £3923.37!

Thank you to our Team Ted Run Balmoral! x x

The final Team who we want to acknowledge are our incredible Team Ted Caledonian Challenge! These guys smashed this event nighttime event and walked day and night across hostile, mountainous terrain to come home in a mind blowing time, bringing in an equally mind blowing sum of £4135.74

Thank you so very much to Hortec Ltd for putting together this awesome team of Graeme Anderson, Steven Davidson, Sam Parsons, lead by Wilbur Stewart.

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As you can see – we truly have the most incredible supporters and it’s our honour to acknowledge each and every one of those named about in our New Years Honour List. What we do just is not possible without this sort of gumption, passion and support and we remain indebted and inspired by all who step up and help us.

So thank you – thank you -thank you!

If you would like to find out how you can get involved with us in the year ahead:

http://www.teddingtontrust.com/get-involved.html

or contact us directly at support@teddingtontrust.com 

 

 

Teddington Trust delivers around the world with DHL

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dhl-logo_official

UK based charity, Teddington Trust, has joined forces with DHL Express UK to provide patients around the world living with Xeroderma Pigmentosum access to their products and services.

A rare genetic condition characterised by an extreme sensitivity to ultraviolet radiation, Xeroderma Pigmentosum patients must be protected from all daylight and artificial sources of ultra-violet light. The DNA repair disorder renders them a staggering 10,000 times more susceptible to aggressive skin cancers than the general population, and prone to complex neurological complications. Patients spend their entire life protected from and avoiding daylight.

Teddington Trust supports patients by providing practical and emotional support and now, joining forces with international express delivery specialists DHL Express, the charity will be able to send UV protective hats, gloves and film for free, as part of its corporate responsibility programme, to patients around the world. DHL will also support the shipping of the charity’s educational packs.

Shipping requirements have been a constant cost for the charity, which works tirelessly to secure funds to cover these costs in order to allow them to respond to every enquiry. The support of DHL Express will mean Teddington Trust can continue to access far reaching communities whilst concentrating funds on equipment and resources.

Nicola Miller, Teddington Trust said: “Month on month, our global reach becomes wider, as a growing number of patients contact us to access our patient information resources and to access life preserving UV protective items. We also have big plans across the UK for our national school programme in 2017, and this partnership ensures we can continue all of these services across the year ahead. We are very proud of this partnering and look forward to working with the team at DHL as we look to ship to Morocco, Japan, Pakistan and more in the year ahead.”

Sharon Davies, Director of Corporate Affairs, UK and Ireland, DHL said: “I’m really pleased to be able to leverage DHL’s expertise in international shipping to support the Teddington Trust. Their support is vital to improving the quality of life of those living with Xeroderma Pigmentosum and we’re proud to play a part in ensuring this much needed equipment reaches every corner of the world.”

 

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Jeans for Genes supports Teddington Trust

Jeans for Genes Award Teddington Trust a grant for children with Xeroderma Pigmentosum

Jeans for Genes Day 2016

TEDDINGTON TRUST are delighted to announce that  we have been awarded a grant from Genetic Disorders UK, the national charity that organises the annual fundraising day, Jeans for Genes Day.

This generous donation will come from funds raised on the day and will be used to fund the purchase of a stock of specially made UV protective gloves and hats with visors that protect children’s skin from ultraviolet light and which will be distributed to families who have a child affected by Xeroderma Pigmentosum

“We cant express how grateful we are for this particular grant! The provision of UV protective hats and gloves is one of the most important services we provide to our XP Community as it has a direct affect on the patients long term health and prognosis. This grant will enable us to fund enough stock to be able to provide this vital protective resource immediately on request without delay to the patient” . Nicola Miller, Teddington Trust

JeansforGenes.jpg

Photo credit A. Cotterill @JeansforGenes: UV protective hat and gloves  

 

 

Xeroderma Pigmentosum is a rare genetic disorder that is characterised by the body’s inability to repair the damage to skin that is caused by ultraviolet light from the sun and most sources of artificial light. Children with xeroderma pigmentosum are 10,000 times more likely to develop skin cancer than the general population and so they must be covered completely at all times when they are outside.

Genetic Disorders UK’s Jeans for Genes Day is an annual fundraising event when school children and office workers wear their jeans in exchange for a donation to the charity. Although individually genetic disorders are rare, together they affect 1 in 25 children. This means that more than 30,000 babies each year are born in the UK with a genetic condition. Sadly, genetic disorders and their associated health problems mean that they are the biggest cause of death of children aged 14 years and under. Funds from Jeans for Genes Day are granted to specialised charities to provide care and support for children affected by genetic disorders. This year Jeans for Genes Day will be held on Friday 23rd September.

Caroline Harding, the CEO of Genetic Disorders UK said: “We are delighted to be helping TEDDINGTON TRUST support children with the rare and complex condition of Xeroderma Pigmentosum. Our grant programme is open to all UK support groups and registered charities who work to improve the lives of children and families affected by genetic disorders. In 2016, 22 charities will benefit from the funds raised by the public on Jeans for Genes Day.”

  • Jeans for Genes Day raises money for Genetic Disorders UK, a charity that provides much needed advice and support for individuals and families affected by genetic disorders. jeansforgenes.org
  • Jeans for Genes Day is an annual fundraising event, this year it will be held on Friday 23rd September. School children and office workers are encouraged to wear their jeans for the day in exchange for donation. jeansforgenesday.org
  • Genetic disorders are caused by an alteration in DNA. This may mean that either a gene or several genes are missing, repeated or in the wrong order. Altered genes can affect a child’s senses, movement, ability to learn or appearance.
  • TEDDINGTON TRUST is a Jeans for Genes Day 2016 grant charity. They will receive a grant towards their UV protective hat and glove project.

JeansforGenes_logo