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Season’s Greetings from our CEO

As 2022 draws to a close, I want to take this opportunity to reflect on the past year at CAUK

There is no doubt that 2022 has brought its challenges; the COVID-19 pandemic, competition for funding and grants, and the increasing demand for our services left us in a difficult financial position. Through the hard work and contribution of our community and the CAUK team we have been able to face these challenges together. Thanks to our amazing team of volunteers – both in support and fundraising – our COVID Recovery Fund campaign, and the success of several grant applications, we are happy to report that we are closing the year in a far better position.

Continuing the momentum…

While we have been able to overcome any immediate risks, we must not stop now. We must keep this momentum going so that our support services can grow and develop to best suit the needs of our members. Despite the challenges we have faced this year, we have been able to achieve some wonderful progress. We are extremely proud and excited to be part of a brand new, cutting-edge research project – CARE PREP. In this exciting new clinical trial, we will be working alongside world-leading experts in cavernoma, and our sister organisations in the US, Europe and other parts of the world, to determine the effectiveness of several potential drugs for the treatment of cavernoma.

Our helpline has been busier than ever, and we have taken more calls and attended to more queries than any previous year. At the same time we have delivered on much needed therapy for many of our members affected by cavernoma. Alongside our medical advisors, we have updated our patient information leaflets (PILS) and have provided additional, updated resources on our website The year ahead promises to bring further growth for our charity, with the excellent news of Helen Evans’ return as co-CEO. Helen’s role will centre on finances and fundraising, as well as in-time research and back-office support, which will allow me to focus on growing our invaluable support services. I plan to continue developing our helpline and therapy services, as well as expanding the quality and variety of resources and information available to our community.

I aim to build better connections and collaborations with other charities and organisations so that our support package is as robust as it can be. Finally, I am eager to revitalise the services and opportunities we offer to our children affected by cavernoma.

Thankyou everyone

I want to say a massive thank you to all of our amazing fundraisers and volunteers, and to everyone who has shared our campaigns and supported us, particularly when we needed it most. It is always hard to find the words to best express our gratitude for the support you have shown the cavernoma community. From all of us at CAUK, thank you!

To my team and trustees, nothing is possible without your hard work and dedication. A big thankyou to you all.

Season’s Greetings,

Joanne Noakes