An update from our Chief Executive

The ever-changing situation in regards to COVID-19 is affecting each and every one of us and it’s clear we all have a very challenging time ahead.

At Action for A-T, our main priority is to ensure the safety of the children and families living with Ataxia Telangiectasia, as well as our staff, volunteers and supporters. We are continuing to closely monitor developments in relation to the outbreak and we’re following guidance from Public Health England, the UK Government and the World Health Organisation.

How COVID-19 is affecting Action for A-T and beneficiaries

Our Beneficiaries

The children and young people with A-T are highly susceptible to lung disease due to compromised immune systems, which places them in a high-risk category.  As with all people deemed to be vulnerable, self-isolation is imperative and we have therefore postponed all events, activities or visits which involved families affected by A-T. The current advice from the specialist A-T clinics is for families to refer to and follow the NHS advice which can be found at For those with immunological issues – such as people with classic A-T, further information and guidance is also available in the statement from the European Society of Immunodeficiencies which can be found here

Our Research

A large proportion of our ongoing studies have been put on hold as many of the researchers have been called back to the front-line to assist the NHS in their time of need and most of the institutions where the research takes place, have been closed until further notice. This also means that our latest studies will begin much later than planned. Organisers of ongoing clinical trials and studies will contact participants directly to appraise them of the situation and provide further details.

Our Fundraising

We cannot stress enough, the huge impact this is having and will continue to have on us financially. Whilst fully understanding the necessity to do so, the postponement of events such as the London Marathon, as well as uncertainty of whether future events will be taking place, is a great concern for us as 75% of our income is generated through event activities. For those of you who are signed up to any of our events, like golf days, balls, dinners, etc, we are continuously monitoring the situation and will keep you updated as and when any decisions about these events are made.

Without your help, we simply aren’t able to support the research community who are striving to find a cure or treatment for A-T. During this difficult and ever-changing situation, we would urge everyone to support us where they can, as we really do need you now more than ever.

You can do this by making a one off or regular donation or simply by setting up a Facebook fundraiser. Those who were planning on taking part in a challenge event for us which has been cancelled or postponed can still show their support by taking on one of our virtual challenges.

Our Office

Our office where our fundraising team are based, is now closed. All staff are set up to work from home and our phone-line has been diverted, so please do keep in touch by phone or email. Our postal mail is being forwarded so we will still receive any correspondence sent to our office.

As a charity, the uncertainty brought by COVID-19 has highlighted how important it is to make decisions quickly and concisely to ensure we can support the research community and the families who need us now and in the future. In these uncertain times it’s important we look out for one another and do what we can to help.

Please do continue to check our website and social media channels as we will update them as and when things change.

Thank you for your continued support in our time of great need

Sean Kelly MSc,
Chief Executive