The Global Search for a Cure

As AT is such a rare disease, it is critical that our valuable resources committed to finding a cure for AT are fully maximised. This can only be achieved through a coordinated effort by all of the major stakeholders across the globe including patients and their families/supporters, researchers, clinicians and charitable organisations.

Consequently, we have developed the A-T Global Alliance, a group of international AT charities, who all believe passionately that we are stronger together. Our collective goal is to speed up the search for a cure, or at least treatments and therapies that minimise the effects of this degenerative disease and allow a better quality of life for those affected. We meet to share findings, strategies and expertise and to facilitate information on AT for researchers, health professionals, patients and families.

An important output of this group has been the creation of the cureat.org website in 2021 which provides a useful source of international information on AT, including information about the latest research projects, publications and clinical trials, patient care, support and registries, related meetings and conferences and various engagement opportunities.

Members of the alliance have also co-funded a research event in March 2022, organised by Action for A-T. “Spotlight on A-T” was a family focused webinar to highlight some of the current AT research projects which are taking place around the world. It was hosted by Broadcaster and Journalist, Naga Munchetty, and researchers from around the world provided a concise overview of their current research studies and answered questions from the audience. The presentations were broadcast live in English and a recording of the full webinar is available to view below.

https://player.vimeo.com/video/681314292?h=ddde3b5ad6

Additional research areas

We are proactive in our support of other global research, whether by conducting surveys for them, guiding project design, or liaising with families. Some examples of this include: supporting Professor Malcolm Taylor’s cancer study of AT patients (The University of Birmingham); and Dr May Yung Tiet’s exploration of cognitive function in AT (Cambridge University).

We have also continued to support various clinical trials through the year. More information can be found here: https://atsociety.org.uk/research/clinical-trials/