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In the course of the year, we raised over £9,000. We walked 70-odd miles of the South West Coast Path, climbed Ben Nevis at sunrise, did Hadrian's Wall through the night, ran a half marathon as Crash Bandicoot, and finished with a 26.2-mile Santa run to the London Stadium. Here’s a rundown of one of the most challenging and enjoyable years of my life!

Our open letter has now been delivered directly to the Secretary of State for Health and Social Care, via supporting MPs, and into the hands of key decision makers across DHSC and NHS England — ensuring our community’s voice is heard clearly, loudly, and unavoidably by those with the power to act.

After nearly two years research and listening to our community, we’re proud to share with you our report “From Silent Risk To Real Recognition: Ending the neglect of hereditary brain aneurysms and transforming care." The report reveals fragmented care pathways, lack of psychosocial support, inconsistent access to screening, and hundreds of preventable ruptures every year.

My healthy, 49-year-old mother was rushed to the ER with sudden nausea and within hours doctors found three brain aneurysms, one already ruptured