The Global A-T Alliance was established in 2020 to maximise the effort, resources and/or funding committed to finding a cure or treatments for Ataxia-Telangiectasia (A-T). Our first objective was the creation of this Global Directory which was established to provide useful information for the wider A-T community. We passionately believe that with increased funding and a continued global and collaborative effort, effective treatments for A-T will be developed sooner and the lives of those affected will be changed for the better.

These are exciting times for medical research. New technologies have been evolving at pace and the pharmaceutical industry is more interested than ever in rare conditions such as A-T. Promising preclinical results raise the possibility for new therapies but translational research towards A-T therapy development still faces several barriers.

Our aim is to overcome these barriers by providing a global infrastructure to ensure that the most promising new therapies reach patients as quickly as possible. Our key focus is the development of tools that industry, clinicians and scientists require to bring novel therapeutic approaches through preclinical development and into the clinic, and on establishing best-practice care for A-T patients worldwide.

Governance

The A-T Global Alliance is a collective of patient groups and charities from all around the world who have joined forces to speed up the process of finding a cure for A-T. Each organisation is represented by a key stakeholder and these individuals are responsible for providing and reviewing the data and key information included on the site. They also manage all communications associated with the site as well as enquiries and aim to respond to these in a timely manner.

Here is a list of the current A-T Global Alliance representatives:

Sara Biagiotti (Italy)

Sara is the volunteer President of the Associazione Nazionale Atassia Telangiectasia organization, which is now the only one charity in Italy supporting A-T patients and their families. The ANAT missions are research, prevention and therapy of A-T.

Mike Clahsen (Australia)

Mike is the President of the 100% volunteer-run BrAshA-T, which is the only charity in Australia supporting A-T patients and their families with a focus on research, awareness, patient/family support and fundraising activities.

Natalie Elkheir (Australia)

Natalie is the mother of an A-T Superstar and the Vice-President of BrAshA-T, the only charity in Australia supporting A-T patients and their families with a focus on research, awareness, patient/family support and fundraising activities.

Sean Kelly (UK)

Sean is the Chief Executive of Action for A-T, a UK based charity whose sole remit is to fund medical research in quest to find a cure or treatment for A-T. 

Susie Norbury (UK)

Susie is Head of Fundraising and Operations at the A-T Society, a UK based charity providing support to people with A-T and supporting and funding research.

Jennifer Thornton (USA)

Jennifer is the executive driector at the A-T Children's Project, a US nonprofit organisation that raises funds to support research projects, scientific conferences and a clinical center aimed at finding life-improving therapies and a cure for Ataxia-Telangiectasia.

Patxi Villén (Spain)

Patxi is the father of Jon, a young man affected with Ataxia Telangiectasia, as well as founder and president of Aefat, the association that brings together families in Spain. In addition, he is a musician fond of folk and he created in 2013 the Aitzina Folk Solidarity Festival to raise funds to investigate A-T. The objectives of Aefat are to support patients and their families, achieve more inclusion, visibility and awareness, and raise funds to finance research and improve their quality of life.

Orly Dror-Azuriel (Israel)

The association for the fight against A-T disease was established in 1999 by parents of children with the disease in order to help the sick children and their families. The association established a national clinic for A-T patients, employs a social worker who assists families in exercising their rights and dealing with the disease in everyday life, and helps finance respiratory physiotherapy treatments.

Join Us

We recognise the valuable work that is being undertaken by the global A-T community to speed up the process of finding a cure or therapies for A-T and passionately believe that collaboration is key for us to achieve this shared vision.

Our goal is to grow the alliance and develop scientifically and geographically over time and know from experience that “teamwork” really does make the “dreamwork”. We therefore encourage other A-T patient groups and organisations to join us.

If you wish to discuss how you can be part of our collective effort, please contact us using the email address listed at the bottom of this page.