October 2017

David Hart

The life of David Hart, who had AT and died at the end of August, was celebrated in an obituary in the Scotsman. Please click 'read more' below to find a link to the paper's website.

August 2017

Gene-editing advance: implications for A-T

There has been a lot of media coverage over the last couple of days of the news that scientists in Oregon have for the first time managed to edit the DNA of a human embryo (effectively a fertilised egg) to remove a mutation which if left would give rise to a serious genetic condition. In this article, we explore the implications of this advance for people living with A-T.

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.

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

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.