July 2017

Update on the ATTeST trial

After several years of planning and preparation, the trial of the Erydex System, now known as the ATTeST trial, is finally underway - in some countries but not yet in the UK. To date, 19 people out of the 180 required have been enrolled on the trial in 7 different countries, including the US, Australia and India.

May 2017

Information on PIP Assessments

There has been talk in the media recently about possible future cuts to disability services and benefits, and this week Theresa May was taken to task by a lady in Abingdon on the issue. This item gives you more information and guidance for those called to apply for Personal Independence Payments (PIP).

April 2017

Tears of Gratitude for Make Some Noise

Families and staff from the A-T Society were reduced to tears of joy when they were presented with a grant cheque from Global Radio's charity Make Some Noise.

TV and radio presenter Jenni Falconer had just handed over a cheque for the amount we had been awarded, when she suddenly took it back saying "but we don't want to give you that........."

Leading Lady of A-T in France dies

It is with very great sadness that we report the recent death after a short illness of Mireille Gervasoni. Mireille, whose son David had A-T, set up APRAT, our sister organisation in France, and for many years was the driving force behind it.

March 2017

A game of two halves

Gorgeous twins, Broghan and Brae Sewell, are living examples of just how indiscriminate A-T is.

They both love cycling, their Playstation and football. But only Broghan has been selected as a potential star - Chelsea FC have signed him up to their under eights team. The other twin, Brae, has Ataxia-Telangiectasia.

Our new film highlights the conflict of emotions experienced by A-T families - their courage and heartache. It shows the family grappling with the different paths their sons lives will take.

January 2017

A-T Society Christmas Raffle

We have some AMAZING prizes on offer in our Christmas raffle including;

* Majorca Villa for 7 nights (sleeps 10)
* Sony PS4
* Exquisite white gold diamond stud earrings
* Overnight stay in a Macdonald Hotel

Order your tickets online today or call 01582 760733.

All proceeds go to support the invaluable work of
the A-T Society.

November 2016

Best mA-Tes

Meet Cian and Jake, 2 young lads with A-T who forged a firm friendship after meeting at the A-T Family weekend.

Being in year 5 and 6 is a difficult time for children with A-T. Their disability starts to progress and they begin to stand out more from their peers as they become increasingly reliant on their wheelchair to get them around.

October 2016

Clinical Research Conference in Warsaw

The A-T Clinical Research Conference 2016, the third in the series inaugurated by the A-T Society in 2012, takes place in Warsaw from 7-9 October. Researchers and Clinicians with an interest in improving treatments and therapies for A-T will be flying in from around the world to take part.

A-T goes Global!

Thanks to the generosity of radio listeners, the Make Some Noise campaign, organised by the Global group of radio stations, raised a staggering £2,860,897 with more donations still to come. The A-T Society was so excited to be part of this year's charity event which culminated in Global’s Make Some Noise day last Friday (7th October). Our small charity was given the most amazing opportunity to share our story to Global’s 24 million listeners and our families had their voices heard across 8 of the biggest radio stations in the UK.

September 2016

Are you willing....?

It’s a common myth that only the rich and famous leave money to charity when they die. This couldn’t be any further from the truth. The reality is that without gifts left in Wills by people like you, many of the charities, like the A-T Society, would struggle to exist. Remember A Charity in Your Will Week is 12 – 18 September 2016. The A-T Society have been working closely with Remember a Charity and Co-op Legal Services - so you can now make a will for just £99 using our special A-T Society discount code.

May 2016

Merry’s TRI-umph

The A-T Society’s philosophy is that everyone with A-T should have the opportunity to live their life to the full. Fifteen-year-old Merry James needs no convincing. By completing a unique triathlon, Merry has shown that you can achieve anything if you put your mind to it. Watch her inspirational film.

March 2016

Erydex trial: successful site visit to Nottingham

A team from the Italian company EryDel, which is planning the international clinical trial of the EryDex System to treat A-T, were very pleased with progress during a recent visit to the proposed trial site in Nottingham. During the visit the team met clinicians and managers from the Nottingham University Hospitals NHS Trust and staff from the A-T Society.

February 2016

A-T Films nominated for Royal Television Society Award

Three information films about living with A-T, our medical research and the work of the A-T Society were nominated for a Royal Television Society factual award.

January 2016

Champagne to celebrate Sorrel’s incredible run

Over 200 supporters turned out to run, cheer and crack open the champagne as Sorrel Hodgson completed her amazing year of running for the A-T Society. Every single day of 2015, Sorrel ran at least 5 km (3.1 miles), clocking up an amazing 1825km or 1134 miles, the equivalent of running from her home town of Nottingham to the very southernmost tip of Spain.

Music to our ears!

The Hertfordshire Chamber Orchestra presents a wonderful evening of music in aid of Harpenden children's charity the A-T Society. We are delighted to welcome soloist Jennifer Pike, a renowned violinist and the youngest-ever winner of BBC Musician of the Year. Jennifer will play the Brahms Violin Concerto accompanied by our Chief Executive William Davis on double bass.

The concert will take place on Sunday 17th January at 6.30pm in Harpenden. Book your tickets online today and be part of this musical evening.

December 2015

A-T Society Christmas Raffle

We have some AMAZING prizes on offer in our Christmas raffle including; Majorca Villa for 7 nights (sleeps 10), a nights stay at Randolph Hotel in Oxford and a Children's Frog bike.

Order your tickets on 01582 760733 or e-mail info@atsociety.org.uk

International statement on lung care in A-T published

This week the European Respiratory Society (ERS) published its Statement on the multidisciplinary respiratory management of ataxia-telangiectasia. The document reviews all the published data on the care of the lungs in A-T and makes a series of recommendations for approaches to treatment.

The statement was produced by a multi-disciplinary ERS task force, made up of international A-T specialists, as well as a parent in the form of our trustee and former chair,

From pizza to piste: A-T adults rise to challenge

The recent adult activity weekend organised by the A-T Society was judged by participants to have been a roaring success. 21 adults with A-T were able to practise new skills, experience the thrills of skiing in real snow and socialise with their peers in an environment where A-T is normal.

October 2015

Flu Vaccine

We have recently had a few queries from people about the 'Flu Vaccine' . Our Doctors advise the following:

"The annual influenza vaccination is recommended for all people who have A-T. Currently we advise the injectable influenza vaccine rather than the 'live' nasal spray vaccine. This is not recommended as this can affect children/adults who have a severe immune deficiency".

If you have any questions about this, please contact us on 01582 760 733. Our family support team, Kay and Anne, will be happy to answer any additional questions you may have.

August 2015

New About A-T Leaflet

Hot off the press - a new version of our introductory 'About A-T' leaflet, featuring some of our children living with Ataxia-Telangiectasia. Download a copy today or contact us for printed copies.

July 2015

Pizza Hut Delivery to support the A-T Society

We are delighted to announce Pizza Hut Delivery have adopted the A-T Society as one of their chosen charities. They will support us through employee fundraising, generating awareness, and volunteering their time and expertise.

March 2015

New Research Insights into the role ATM plays in repairing damaged DNA

A number of articles have been circulating in recent days about a scientific paper which gives new insights into the role of ATM in repairing damage to DNA. The articles suggest that this discovery may help with the ‘development of new therapies’ for A-T and similar conditions. The paper has some novel and interesting findings and increases our understanding of the complex role played by ATM however, it still leaves many questions to be answered. Click on the picture to find out more.

January 2015

Mega Tri 2015

The Mega-Tri is just a few days away.

Our intrepid A-Team of swimmers, cyclists and runners are preparing to travel to Brighton in support of everyone living with A-T.

There are still places in the Swim and Cycle for both individuals and teams,you can take part in one or the other or even both.

December 2014

Latest newsletter published

The latest edition of the A-T Society news, packed like Santa's sack with good things, has hit the news-stands.

A-T families and supporters should have got a copy in the post but anyone who hasn't seen it or would like to share it with friends can do so by clicking on the picture and following the links.

November 2014

Focus on improving health in Nijmegen

The A-T clinical research conference 2014, which concluded on Saturday in Nijmegen, the Netherlands, was considered by all its participants to have been a great success.

The conference had a strong clinical focus, with lots of opportunity for doctors and therapists to share experiences and discuss how to improve clinical care.

To read more, click the picture above.

October 2014

Clinical guidance published

We are delighted to announce that the clinical guidance document on diagnosing and treating A-T in children has been published. This is the first ever guidance document specifically aimed at doctors and therapists treating children with A-T.

The document provides guidance on how often children should be seen, how they should be assessed and what the most appropriate treatments are. The guidance comes from the experts at the Nottingham clinic, as well as Prof Malcolm Taylor and two world-leading cancer experts from the USA.

For more information and to see the guidance, click on the image above.

Flu Vaccination Guidance

It is strongly recommended that everyone with A-T and their families receive a flu vaccination each year.

For more information from our A-T specialist immunologists please click on the image above.

September 2014

Calendar 2015

The first A-T Society Calendar is available now. We have limited numbers, so order yours very soon!

It was created with the help of 20 Sqn. Royal Logistics Corps and the amazing children and families who live with A-T.

All proceeds of the Calendar will go to medical research into treatments and a cure for Ataxia-Telangiectasia.

We love it and we hope you will too!

April 2014

Brighton Marathon 2015

Places are now available to join the A-T Society team at the Brighton Marathon on 12 April 2015.

Take part in the UK's 'most beautiful' marathon and enjoy a day by the sea.

For runners this is a splendid course with huge amounts of support from the crowds lining the route. It's one of the A-T Society's larger events and we would love you to take on the challenge of a marathon for us!

For more information click on the image above.

January 2014

25th Anniversary Brighton Marathon Places

Make it your New Year's Resolution to run a marathon and support The A-T Society in our 25th year.

Join this fantastic team for a day at the seaside and help change the lives of A-T families for the better - one step at a time!

Click on the image to link with the booking form.

November 2013

Flu vaccination

People with A-T who haven't yet done so, should remember to book a flu vaccination with their GP. We would recommend that all children and adults with A-T have the vaccination, along with their family members.

Our doctors' advice is that this should be given by injection and not by the live nasal spray. (Click on title above to read more.)

Up-beat up-date on Cambridge A-T research

Representatives of the Freemasons and the A-T Society were very happy to hear of the progress being made on the Synthetic Viability project which they are jointly funding at the Gurdon Institute in Cambridge.

In a meeting at their laboratories, Prof. Steve Jackson and Dr Josep Forment thanked both charities for their support and outlined the advances that they had made in their project, which explores the potential of a inovative approach to treating AT-T.

October 2013

New research positive but no break-through yet for A-T

The media this morning, 10 October, have given prominence to a paper just published, in which researchers have succeeded in blocking neurodegeneration in mice with prion-disease. It is claimed that this is a significant step towards developing treatments for Alzheimer’s Disease and a number of other neurodegenerative diseases, including Parkinson’s, Huntington’s and ALS.

Many people living with A-T have read this story with great interest, hoping that A-T would be one of the conditions to benefit from the advance. However, while the findings of the study are very positive, and do give hope, they are not immediately applicable to A-T.

September 2013

Family Weekend 2014

We are pleased to announce that next year's Family Weekend will be held on the 27/28/29 June 2014 at the Park Inn Hotel, Heathrow Airport. This is a very spacious and accessible hotel with plenty of free parking. Please keep this date in your diary, more details to follow soon.

May 2013

Cutting Edge Research offers new hope

A research team headed by Professor Steve Jackson of the Gurdon Institute, Cambridge is planning to use state-of-the-art genetic technology to test a completely new approach to treating A-T and hereditary breast-cancer.

This technique, known as synthetic viability, has already shown promising results in the laboratory with conditions related to A-T. The research is being jointly funded by the A-T Society and the Thomas Appeal.

To read more, click on the title above.

EryDex studies gain FDA approval

Good news from the USA. The company EryDel has been granted permission by the US Food and Drugs Administration (FDA) to proceed with tests on its innovative Erydex system for delivering dexamethasone.

As we reported a few weeks ago, FDA authorisation will result in the need for some small phase 1 (safety) trials, before moving onto a bigger trial, which will be critical in determining the drug’s effectiveness. This trial will take place in several different countries and is likely to include patients in the UK.

Some very sad news

The A-T Society is shocked and deeply saddened to learn that fundraiser Kevin Kennedy, who was enthusiastically preparing to ride the RideLondon 100 on behalf of the A-T Society, collapsed and died while out training for the event on Sunday.

Kevin, who was 48, was part of a group of six friends from Rickmansworth who had been training together since February for the 100 mile challenge event. He was married with two teenage sons. Like most of the group he had not been an active cyclist before taking it up again to raise funds for the Society. But he had thrown himself into the project with real gusto.

The thoughts and prayers of the A-T Society are with Kevin's wife and family.

April 2013

Global Mega-Tri Weekend

Triathletes from around the world joined amateur swimmers, cyclists and runners in the biggest fundraiser the A-T Society has seen.

When little Lola Bloomer was diagnosed with A-T in summer 2012, Mum Joanne took to Facebook to ask her friends for support. Kevin McGregor, an old friend based in Singapore, immediately took up the challenge and arranged a Mega-Triathlon involving his contacts in Singapore and old friends from France, Belgium, Ireland and the UK.

April 2012

NHS guidance for breast-cancer screening published

The NHS has now formally published its guidance for breast cancer screening both for adult women with A-T and for women who carry the gene.

January 2012

Emily wows for Children in Need

18 year old Emily Woodward featured in BBC Three Counties Radio's Children in Need programme.

Pink Ladies Perfect Performance

Fleet based Lisa Baker and her friends arranged a hugely popular Christmas Craft Fair.

Worldpay confirm Charity of the Year

Cambridge based Worldpay have nominated the A-T Society for their Charity of the Year 2012

November 2011

The A-T Society rebrands

The new logo is bright and strong. It says clearly what we do. The off-balance triangles suggest the problems of balance and coordination that come with the A-T.

Clarke Willmott Bristol Charity of the Year

Staff at Bristol law firm Clarke Willmott voted to offer support for two years to The A-T Society and a charity local to Bristol, the Jessie May Trust.