teddington trust

Staying out of the shade…


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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.

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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.

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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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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

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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.

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Help us fight the fight – #BearsforRare

Earlier this year we sent a large shipment of our Little Ted patient packs to Australia. Very sadly in the time between us initially making contact with the group out there and us having raised enough funds for the packs, two of their eligible children passed away. And so with great sadness we took the decision to remove the usual Little Ted signature from the paw of two of our bears and replace with the names of the individual children who had passed, so that these could be sent as memorial bears to their parents.

And this is not entirely isolated, a beautiful little boy in South Africa passed away within months of receiving his own Little Ted.

Death is never easy to talk about, especially in children, and in the case of XP the causes can be many. It can be a result of neurological complications, organ cancers and of course as a result of skin damage and cancers. It’s an often harsh and cruel condition and as a result some deaths are tragic and unavoidable, but some we can ALL do something about!

Early diagnosis, education and resources to enable robust protection can do so very much to improve the prognosis and mitigate against skin damage and its effects.  And at Teddington Trust we are really, really trying to do something about this, both in the UK and globally, and here is how:

  1. Early Diagnosis: We are working very hard to get our Little Ted goes to school… pack into as many schools across the UK as is humanly possible! The pack is a valuable resource for all children, but maybe, just maybe this increased awareness and education across the country might lead to a few new diagnosed children;
  2. Education: We recognise that education for children with the condition is vital so they grow to understand their condition and how to protect themselves whilst still enjoying as full a life as possible. Our BMA Award winning pack does just that, and every child across the world with XP aged 0-12 years is eligible to receive one for free;
  3. Resources/Protection: We send free UV protective hats, gloves and visor film to children across the UK and internationally as needed to help ensure that regardless of economic status and resources available locally, all XP children have across to these two key elements of protection.

And so, this is why our #BearsforRare campaign is so important. For every £150.00 pledge/funded schools pack, we can address Early Diagnosis and Education, and with fundraising and grants we work hard to obtain, we can also provide the Protective resources.

Please help us, so that we can reach the growing number of XP children (in excess of 100) all waiting to receive our packs, so that we can get to them in time. And help us achieve all of the above!!

And if you don’t know how you personally can help please see below for a quick summary:

Are you?

  1. A Parent? :  Get your school to sign up and join our campaign: Click HERE
  2. A Teacher, TA, PFA? : Sign up or BUY your pack now to join our camping and access our resources: Click HERE
  3. A Company or Society: Why not sponsor a pack for your local school?  Pledge HERE
  4. A Individual: You can pledge HERE: or if you would like to fund-raise for us please get in touch via support@teddingtontrust.com
  5. Everyone: Join our #BearsforRare social media campaign. Watch this short video to find out how. https://www.youtube.com/watch?v=tBk1025tIX8. We REALLY want this to go VIRAL so please we call on everyone who reads this post to get involved in this very simple way. See below a handful of some who have already joined the campaign.

 

 

Join the #BearsforRare movement and become the movement!!

#BearsforRare_London


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Hortec’s Team Ted romp to victory for Teddington Trust

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Employees from two Aberdeenshire local business’ Hortec Ltd and Graeme A. Anderson Builder came together to form Team Ted at this years’ Caledonian Challenge.

The team conquered the grueling 54 mile, 24 hour mountain event in an astounding 15 hours 58 minutes placing 2nd team overall and 1st walking team across the line.

Exhaustion failed to dampen their spirits with Graeme Anderson announcing “This is by far the best thing I have ever done”, just minutes after crossing the finish line.

The team came together earlier this year to raise awareness and funds for Teddington Trust helping us in our quest to supports patients suffering from the rare genetic condition Xeroderma Pigmentosum.

Between them, the four strong team have raised over £3000 with more still coming in!

“We are extremely proud of all the team who have done an amazing job in raising both the profile of our charity, and much needed funds. These funds can now be used to send vital Little Ted patient information resources to some of the 90+ children currently on our waiting list.” Rebecca Stewart Teddington Trust Co-Founder.

Hortec Ltd owner Wilbur Stewart said “My involvement with Teddington Trust began in 2012 when my nephew was diagnosed with XP just 13 months old. The important work that these funds enable Teddington Trust to carry out make the aching muscles and blisters worth it. The team have done an amazing job and we are delighted to have achieved such a great finish time.”

Anyone wishing to sponsor the team may still do so by texting TTED04 (followed by the amount) to 70070 or through their just-giving page https://www.justgiving.com/teams/teamtedcalchallange

If you would like to contact Teddington Trust you can do so by emailing Rebecca at rstewart@teddingtontrust.com or at www.teddingtontrust.com

Follow us on facebook to see more pictures from this epic event.


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When Little Ted met Buttony Bear

Our journeys began like many others do, when something that is completely off your radar touches your life and changes the course of it forever.

We are just four Mums in an army of Mums, Dads, Aunties, Uncles and Grandparents all over the country who are passionate about making ‘rare’ lives better.

Between us we run Teddington Trust and A Bear Named Buttony.

They may be two very different charities supporting very different conditions but we are taking the same approach to educating and protecting children living with complex conditions.

Meet Little Ted and Buttony Bear; these hardworking little bears are passionate about being a good friend to children who are just like them.

 

 

Little Ted – Teddington Trust Co-Founder Nicola Miller developed Little Ted and his adventure story books as a reaction to a lack of age appropriate material to help Nicola’s young son learn about his life limiting condition Xeroderma Pigmentosum (XP). Now, an army of UV reactive Little Teds not only travel the world to help young children learn in a positive way how they can live a full life with XP, but also goes to school as part of a primary school education resource; teaching key topics such as diversity, inclusion, rare disease and sun safety for all. Last year this special Ted and his accompanying stories won a prestigious BMA Patient Information Award – Information for Children 2015.

Buttony Bear – Jenny Gow and Lynn Park, with the support of a team of friends decided to do something positive to help children who need to have ostomy surgery. They developed Buttony Bear after a friend gave a bear to a child they knew who had a gastrostomy many years ago. The bear had a button in its abdomen in the same position as the child’s gastrostomy. This simple idea gave her a ‘friend like me’ and is much loved years on from that operation. Buttony Bears now travels the globe having a huge positive effect on the new children they go to live with.

Both charities send out these valuable educational resources to children across the world free of charge offering a valuable friend to both child and parent, and a wonderful way for children to engage with their peers about their condition.

If you would like more information or would like to make a donation to allow us to continue reaching children with our super hero Teds please make contact through the links below.

For Little Ted and the work of Teddington Trust visit: www.teddingtontrust.com/#BearsforRare or our Teddington Trust or Little Ted-XP Facebook and twitter pages.

Email: support@teddingtontrust.com

Donate at: https://campaign.justgiving.com/charity/teddington-trust/bearsforrare

 

For Buttony Bear visit: A Bear Named Buttony Facebook page.

Email: Jenny at buttony@breakawayfoundation.org.uk

Donate at: http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserPage.action?userUrl=ButtonyBears&faId=598304&isTeam=false

They look forward to hearing from you. x


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From then till now… (Guest blog by Cathy)

Foreword by Nicola Miller, Teddington Trust

One of our key objectives is to educate and inspire others affected by XP, to realise, at that key time of diagnosis that much is still possible. And one inherent trait that all XP families, we have been in contact with share, is an unbelievable spirit to get up, get on and make life great, and sometimes to the outside world they make it look too easy.

But; make no mistake a diagnosis of XP is a devastating one that affects every aspect of the patients life and requires a considerable commitment to the unconventional.  What we cannot and must not do is avoid or undermine the seriousness and often cruel reality of this condition, and we must accurately portray and represent what it means in different ways to different members of our XP community.  You have heard us mention the possibility of neurological involvement for XP patients, but what does this really mean?

Please take some time to read the story of a beautiful and incredible young man called James, as written in words and pictures by his Mum Cathy.

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From then till now… by Cathy


“James first burnt at 14 days old on a sunny April day.

He was diagnosed with Xeroderma Pigmentosum at 7 months old and we tried as a family to come to terms with what the future might hold for us all.

What we didn’t know until James was 3 years old and showing that he had speech and language delay, and was unsteady on his feet was that he carried the XP gene that would lead to him deteriorating neurologically.

James 3

This was like going back to square one, almost feeling like it was an additional diagnosis rather than part of XP, after all we had focused on him not burning not getting cancer so it was all to do with skin.

Suddenly people were talking about him losing hearing, mobility, cognitive function, without being able to support him if it would happen, how affected he would be or over what period of time.

No one could even tell us why it happens to some people and not others. All they could say was it wasn’t related to sun exposure, so no matter what we did if it was going to happen it would, and it did.

James had normal hearing in the March just before his 7th birthday, by the September of that year he had bilateral hearing aids. He rode a two wheel bike in the April for his birthday, and by June he had to give it up for a disabled tricycle which he loved–bless him.

Since then some function he has lost slowly and others very abruptly.

The worse has been since October 2013 when his vocal chords suddenly became paralysed. He was at his day care centre on the Wednesday and in a blue light ambulance on the Friday. He had a tracheotomy inserted and made a quick recovery and was in Cyprus on holiday 12 days post op.

No longer able to talk, the silence was difficult for us to adjust to but James took it in his stride. We adjusted to little sleep, video monitoring him at night and carrying around suction machines, trachy tubes, and holding our breathe that nothing would happen if we went out. The management of his skin well established by now we almost forgot about, performing tasks robotically, all energy on keeping him safe not from UV but from choking, or the tube blocking.

James had been having swallowing difficulties, puréed food and thickened drinks, for the past year, one Christmas eating a normal dinner, the next a puréed dinner, and by the next Christmas he was tube fed. This was probably the worse period. James suddenly become unable to swallow in February 2014, and one day yoghurt came out of the trachy, the following day he was coughing, and the next in hospital in resus –he had pneumonia.

This lead to him being tube fed, and later having a gastrostomy to feed him to keep him alive as he could no longer eat. He was allowed to drink water, but this has recently had to stop as he was coughing and producing a lot of mucus from the trachy. It was during this admission that James changed the most.

He was in hospital for 8 weeks seriously ill for some of it and recovering for part. However the feed gave him diarrhoea, and he had to wear nappies– he had gone in wearing boxer shorts! Medication was given with little effect and the feed was changed numerous times until he tolerated one with the need still to have medication four times a day. He was discharged a completely different person his personality gone, no laughter no sparkly eyes, my boy gone just a shell of his former self.

Unable to talk I have no idea what he makes of it all — to go from running around, riding a bike, being able to horse ride and swim to now not being able to even stand, unable to tell anyone anything, unable to eat, wearing nappies, cough and choke on your own salvia; just soul destroying.

Yet some days he tries to smile, he still flirts, and at the specialist Sense centre he attends he follows wheelchair yoga, participates in art, cooking etc. Other days he is unable to hold his head up, stay awake or control the drooling .

What makes one day so different from the other we have no idea, what the future holds no idea, how long will he live no idea, how much is he loved–loads x”

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