The story so far…
In January 2018 our lives were tuned upside down when our, then six year old daughter, Francesca, was diagnosed with Cerebral Proliferative Angiopathy (CPA) - a rare, incurable brain disease.
Initially, the diagnosis was an Arteriovenous Malformation (AVM) - an abnormal connection between arteries and veins - which came with various treatment options. However, after further investigation, we were informed that it was actually a CPA - a rare type of AVM in which normal brain tissue is trapped within a network of abnormal capillaries, making it impossible to cure.
Currently, treating a CPA comes with too many risks. Patients are conservatively managed and their symptoms are controlled using various pain and anti-seizure medications.
The idea that Francesca has to live with a condition that can’t currently be cured is heartbreaking. Not knowing what the future holds for her and not being able to do anything about it is hard to take. We consulted with her medical team at Great Ormond Street Hospital (GOSH) and decided to set up CPA Research Foundation in order to raise awareness and funds for the much needed research into the condition.
Unfortunately, our story is not the only one. Read our stories to hear from others in our growing community.
Our hope is that one day we will have a cure!
Thank you for visiting our website and supporting our vision.
Christopher and Sinéad James
Co-founders and Trustees