A-T Society interviewed by The Guardian newspaper about housing crisisThe dire problems faced by many families living with A-T in getting suitable housing was highlighted today by the Guardian newspaper. The report features a number of cases where parents have been left carrying grown children up and down stairs and even injuring themselves as councils and housing associations refuse to accept responsibility to adapt properties. A-T Society chief executive William Davis says ‘This housing crisis for people with disabilities is getting worse every day and our support team spend more and more time fighting to get families homes where they can live with dignity. It’s great that the Guardian has chosen to highlight this issue. Let’s hope that it kick-starts some change. We will be working with other organisations to go on highlighting the problem.’
Research into A-T and diabetes - we need your helpAdults with A-T are being asked to take part in an exciting research project at the University of Dundee. The project, investigating the link between A-T, diabetes and fatty liver aims both to improve treatment of diabetes in A-T and throw light on metabolic aspects of the condition.
Participants, who need to be non-diabetic, will take two known and entirely safe medicines over a 6 month period. In return they will get 3 fully-funded trips to a comfortable hotel in Dundee, with a carer, and the knowledge they are helping improve our understanding and treatment of A-T.
A-T Society Christmas RaffleWe 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.
Best mA-TesMeet 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.
Clinical Research Conference in WarsawThe 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.
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.
Merry’s TRI-umphThe 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.
Erydex trial: successful site visit to NottinghamA 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.
A-T Films nominated for Royal Television Society AwardThree 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.
Champagne to celebrate Sorrel’s incredible runOver 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.
A-T Society Christmas RaffleWe 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 firstname.lastname@example.org
International statement on lung care in A-T publishedThis 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 challengeThe 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.
Flu VaccineWe 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.
New About A-T LeafletHot 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.
Pizza Hut Delivery to support the A-T SocietyWe 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.
New Research Insights into the role ATM plays in repairing damaged DNAA 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.
Mega Tri 2015The 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.
Latest newsletter publishedThe 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.
Focus on improving health in NijmegenThe 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.
Clinical guidance publishedWe 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 GuidanceIt 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.
Calendar 2015The 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!
New grant funds research into treatment for ataxia-telangiectasiaWe are delighted to announce that the A-T Society, in partnership with Action for A-T and children’s medical research charity Sparks, has given a grant to Professor Claudio Pignata of the University of Naples for work to understand how it is that steroids seem to have a positive effect on A-T.
Brighton Marathon 2015Places 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.
25th Anniversary Brighton Marathon PlacesMake 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.
Flu vaccinationPeople 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 researchRepresentatives 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.
New research positive but no break-through yet for A-TThe 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.
Family Weekend 2014We 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.
Cutting Edge Research offers new hopeA 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 approvalGood 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 newsThe 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.
Global Mega-Tri WeekendTriathletes 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.