Launching HBA Support’s First Impact Report: A Milestone Year for Brain Aneurysm Support
- Jun 25
- 3 min read
This milestone belongs to you.
After our first full year as a registered charity, we are proud to launch our first Impact Report, a report shaped by patients, families, survivors and supporters who know what it means to live with hereditary brain aneurysms.
Our journey began in 2022 with a small six‑page website and one powerful determination: that no family should ever have to face fear, uncertainty or unanswered questions alone.
Since then, you have helped turn that determination into a national charity. Together, we are supporting hundreds of people, influencing research, and making sure hereditary brain aneurysms are no longer ignored, misunderstood or pushed to the margins.
This first Impact Report is not just a record of what we have done, it is proof of what becomes possible when a community refuses to stay silent.
Our work began with lived experience, and it continues because of lived experience. Our founder, Rebecca Middleton, lost both her grandmother and mother to ruptured aneurysms, and later discovered that she carried the same inherited risk. Three generations of one family were affected by a preventable pattern. That loss, fear and isolation became the foundation of our mission, to make sure you and your family have support, information and understanding when you need it most.
Our first Impact Report captures a year in which your voices helped create real change. More than 1,700 volunteer hours were given by patients, families and supporters. People with lived experience helped shape resources, research priorities and policy conversations. Your stories, your courage and your determination made our voice stronger in national discussions about screening, care pathways and recognition.
What we achieved for people impacted by brain aneurysms in our first year
One of the most important things we achieved in 2025 was helping people feel less alone. We launched Brain Aneurysm Friends, our first peer support programme, and created the UK’s first podcast dedicated entirely to brain aneurysms.
For many patients and families, this was the first time they had found a community that truly understood what they were going through. Early feedback shows that people feel less isolated, more supported and more confident about living well with their condition.
We also made trusted information easier to find at the moments when it matters most. We published the UK’s first professional suite of patient guides for brain aneurysms, including a How to Live Well guide and a Young Person’s Guide written by a young person. As awareness grew, we directly supported 54 per cent more individuals, helping patients and families access clear, clinician‑reviewed answers when uncertainty can feel overwhelming.
Your voice is also shaping the future of research and care. We became the Patient Partner for the ROAR study, the largest hereditary brain aneurysm study in the world, and launched our Patient and Family Advisory Panel. This means lived experience is not being added as an afterthought, it is helping guide how brain aneurysms are researched, understood and supported.
We also fought to make sure brain aneurysms are recognised at national level. Through sustained engagement with MPs, the Department of Health and Social Care and a formal submission to the NHS 10‑Year Plan, we are working to secure a seat at the table, because patients and families affected by brain aneurysms deserve to be seen, heard and prioritised.
 Looking ahead
Launching our first Impact Report is a proud moment, but more than that, it is a promise. It is a promise to every person waiting for answers, every family trying to understand their inherited risk, every survivor rebuilding their life, and every loved one carrying grief. We will keep working so that everyone affected by a brain aneurysm is understood, supported and guided by a system that recognises their condition and their needs.
As we look ahead to 2026 and the publication of our landmark Policy Report, we will push even harder for recognition, research and improved care pathways. We will continue to speak up, challenge silence and fight for better support for patients and families.
To every patient, survivor, family member, clinician, researcher, volunteer and supporter who has stood with us - thank you!
Your courage, generosity and belief in this mission are what made this milestone possible and, together, we are only just getting started.
Read our 2026 Impact Report here