September marks Brain Aneurysm Awareness Month, a crucial time to shine a light on a condition that affects so many lives, yet remains underrepresented in public health conversations. At HBA Support, this month holds special significance as we reflect on our journey and celebrate our second anniversary. It’s an opportunity for us to acknowledge the strides we have made in raising awareness and providing support to those affected by hereditary brain aneurysms, and to share our vision for the future.

Founded in 2020, HBA Support was born from my deeply personal experience with the devastating impact of brain aneurysms. My journey began in 2009 when my mother suffered a double catastrophic brain aneurysm rupture, an event that changed my life forever. At that time, doctors reassured me that it wasn’t likely hereditary, but my story didn’t end there. Years later, I was diagnosed with a right middle cerebral artery (MCA) brain aneurysm and underwent treatment. The shock of my own diagnosis and the treatment that followed left me feeling incredibly isolated and overwhelmed by a lack of information and support. This experience made me realise the urgent need for a dedicated network to help others facing similar challenges. This led to the creation of HBA Support, an organisation committed to providing information, support, and community for individuals and families affected by hereditary brain aneurysms.

Now, two years later, we’re proud to continue this mission with renewed vigour, thanks in part to a generous grant from the National Lottery Community Fund, which has enabled us to expand our outreach and impact more lives.

Our journey and the power of community

From the outset, HBA Support was driven by a simple yet powerful vision: to provide a compassionate and informative resource for those navigating the challenging path of living with a hereditary brain aneurysm. In these two years, we have grown from a small, community-interest company to an organisation poised to become a registered charity, reflecting our commitment to sustainability and long-term support for our community.

One of the milestones we are particularly proud of is receiving over £19,000 in funding from the National Lottery, awarded to us this summer. This grant is hugely appreciated and will allow us to expand our reach and enhance the services we offer. With these funds, we are developing new patient guides, launching a peer-to-peer support group on Facebook, and creating compelling video content that tells the stories of those affected by hereditary brain aneurysms. Each of these initiatives is designed to foster a sense of community, provide vital resources, and, most importantly, bring hope to individuals and families who may feel isolated or overwhelmed.

Bringing hope on the horizon with research and support projects

At the heart of our work is a commitment to research and support projects that bring hope on the horizon for everyone in our community. We believe that by advancing knowledge and improving care pathways, we can make a real difference in the lives of patients and their families. Here’s a closer look at some of the exciting initiatives we are currently undertaking:

1. Improving the patient journey – Costello Research project

Having successfully applied for pro-bono research support earlier this year, HBA Support is also working with research partner, Costello Medical, in an attempt to take a closer look at the pathway for patients with suspected familial brain aneurysm syndrome. The goal here, is eventually, to explore the gaps and inconsistencies in current practice across the UK, and highlight any improvements that could be made from a patient perspective.

The project outline is being further refined in partnership with Costello Medical.It’s still early days, but HBA Support is excited to explore this important topic for our community, review the guidelines and eventually study the patient experience.

2. Supporting the experts – ROAR studies

We are also proud to continue our collaboration with Professor Butler, a leading Consultant Neurosurgeon and Chief Investigator of the Risk of Aneurysm Rupture (ROAR) study. This groundbreaking research seeks to predict which brain aneurysms are most at risk of rupturing, providing critical insights for both patients and healthcare providers.

The ROAR study involves analysing data from approximately 20,000 anonymised medical records from UK neurosurgical units, focusing on patients with unruptured aneurysms and their outcomes. The results will help future patients assess their risk and decide on the best management strategies, bringing hope through personalised care and prevention. We are committed to supporting this study and look forward to sharing its findings with our community as they become available.

3. Improving patient information and support – Medtronic project

Thanks to the generous support of Medtronic, a global leader in healthcare technology, and Mearns & Pike, a specialist medical communications agency, we are developing a comprehensive patient guide. This booklet is being crafted with input from our community, including patients, their families, NHS clinicians, and neuro specialists. It is designed to be an accessible resource that offers essential information, practical tips, and advice for those diagnosed with or suspected of having familial brain aneurysms.

This project exemplifies our collaborative approach, ensuring that the guide is not just informative but also deeply empathetic and relevant to those who need it most. We are currently assembling a steering committee that includes neuro specialists like Consultant Neurosurgeon Mr. Samir Matloob and Subarachnoid Hemorrhage Advanced Clinical Practitioner, Catherine Lamb, both from Oxford University Hospitals NHS Foundation Trust, alongside patients and a genetic counsellor. The guide is set to be delivered by early next year, followed by a full promotion and awareness campaign. We are excited about this resource’s potential to empower patients and healthcare providers across the UK.

4. Supporting future experts and researchers

Investing in the future of aneurysm research is a key priority for us, which is why we are pleased to support two outstanding students from Cardiff University, Lily George and Olivia Sharpe, in their Master of Science Genetic Counselling studies. These students are eager to speak with individuals affected by familial aneurysms to learn more about their experiences and incorporate these insights into their education and future practice.

By supporting the next generation of experts and researchers, we are helping to ensure that the future of aneurysm care is brighter and more informed. We encourage anyone interested in sharing their story or contributing to the training of future genetic counsellors to get in touch. Your participation can help shape the future of care and bring hope to many.

Join us in creating hope

As we celebrate Brain Aneurysm Awareness Month and reflect on our two-year journey, we are filled with gratitude for the support we have received from our community, partners, and funders. Together, we have made significant strides in raising awareness, advancing research, and providing support to those affected by hereditary brain aneurysms. However, there is still much work to be done, and we invite you to join us in our mission.

By sharing your experiences, participating in our research initiatives, and spreading the word about this condition, you can help us make a real difference in the lives of those affected. Together, we can enhance patient care, improve clinical pathways, and bring hope to everyone in our community.

If you want to contribute in any way, please reach out. Your story matters, and your involvement can help bring about change and hope for all those impacted by brain aneurysms. Let’s work together to make hope a reality.

Rebecca Middleton
Founder, HBA Support

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