UK Based charity raising awareness and vital funds needed for research into Cerebral Proliferative Angiopathy (CPA). Cerebral Proliferative Angiopathy (CPA) is an extremely rare brain disease in which normal brain tissue is trapped within a network of abnormal capillaries, causing patients to live with Stroke like symptoms. Its diagnosis currently sits under the umbrella of a brain Arteriovenous Malformation (AVM) and has been diagnosed in the past as a large diffuse AVM. However, it is thought that only 3.4% of brain AVM patients are diagnosed as having CPA. Currently, there are no known activities being undertaken to develop much needed therapies to control it and officially classify it as a separate disease - giving it a voice.
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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.
Our hope is that one day we will have a cure!