May 2013
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
2013 sees lots of new diagnoses of A-T
The beginning of 2013 has seen an unexpectedly large number of new diagnoses of ataxia-telangiectasia. As we come to the end of April, one third of the way through the year, the A-T Society has already been notified of twelve new cases, as compared with a total of ten during the whole of 2012.The children diagnosed range in age from one to thirteen. The one-year old was diagnosed so young due to having an older sibling with A-T. Three of those diagnosed were only two years old.
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.
Another small step towards dexamethasone trial
Some encouraging news from America where the company Erydel is awaiting a response to the application it has submitted to the authorities for permission to proceed to clinical trials with EryDex, its innovative steroid treatment for A-T.It was announced today that another company, called Erytech, has been granted permission to proceed to trial with a treatment for leukaemia, which involves a similar technology. While this in no way proves that EryDex will also be approved, it is nevertheless positive that a similar treatment has been authorised to commence trials.
March 2013
A-T research pipeline published
For the first time ever, an A-T 'research pipeline' has been published, setting out in visual form all the different areas of A-T research and their state of progress.Created jointly by the A-T Society and the A-T Children's Project in the USA, the pipeline shows 26 different research projects, providing information on the projects and what stage they have reached.
A-T Hero in World's Toughest Marathon
With just three weeks to go until he takes on the Marathon des Sables for the A-T Society, Sergeant Trevor Sanderson is running hundreds of miles each week in preparation for the toughest race of them all!
A-T Society joint-funds new gene therapy project
The A-T Society is delighted to announce the award of a two–year grant to Professor Ignacio Molina of the University of Granada for a project focusing on the pre-clinical development of gene therapy for A-T. The grant is being made by A-T research fund which is jointly funded by the A-T Society, Action for A-T and Sparks.February 2013
A-T never leads to 'locked-in syndrome'
A number of families have contacted the A-T Society recently, distressed by stories they have read in the press which say that A-T can lead to a form of ‘locked-in’ syndrome.We can state categorically that this does not happen with A-T. There are no recorded cases of this happening to anyone with A-T and there is nothing about the symptoms of A-T that is likely to lead to anything like this situation.
Benefit Changes
Personal Independence Payment (PIP). From April 2013 the new 'Personal Independence Payment' (PIP) will begin to replace 'Disabled Living Allowance' (DLA) for working age adults (16-64). This will introduce a points-based assessment and most people will be asked to attend a face to face consultation as part of the process. If you are currently receiving DLA you will be contacted by the 'Department for Work & Pensions' to assess you for the new benefit. (There are NO plans at present to replace DLA for children age 16 and under or for those over 64).January 2013
New patron steps out
At the end of January, Lord Bilimoria, the Society's new patron, welcomed a number of staff and trustees to a meeting at the house of Lords to discuss his new role. He is pictured here with trustee Hasita Senanayake and chief executive William Davis.
Month of Marathons
Deployed to Afghanistan over Christmas Martin Hine told his colleagues in 904 Expeditionary Air Wing based at Kandahar airfield all about little Lola Bloomer.They all wanted to help, and from 26 December 2012 - 25 January 2013 they will be running as many marathons as they can.
Ride 100 London - Open for Business!
Launched by the Mayor of London and the organisers behind the Virgin London Marathon, the UK waits with baited breath for what promises to be the cycling event of the year!On 4 August 2013. Over 20,000 people will take on the 100-mile cycle challenge which starts at the Queen Elizabeth II Olympic Park, following the Olympic route all the way to Surrey (where you will be expected to take on the gruelling Box Hill circuit!) and finishes back in London where you will be cheered by thousands of spectators along The Mall.
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 2012November 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.
+44 (0) 1582 760733