Brain Aneurysm Awareness Month 2024

September is a very special month for all those impacted by our condition. As we mark Brain Aneurysm Awareness Month, we remember the thousands of people who have been impacted by this devastating disease. 

There are 1.5 to 2 million people in the UK living with an unruptured aneurysm, and around 16% of these cases could have a genetic component. We understand the immense worry that comes with a brain aneurysm diagnosis, but you don't have to face it alone. This year, we are more dedicated than ever to bringing hope through our research and support initiatives.

We've spent the last two years understanding the research currently out there and are now pushing the research community to fill in the gaps that will bring hope on the horizon for our community. This year, our theme is hope. It’s about shedding light on support, research and highlighting the dedicated clinicians and researchers out there supporting our community and working together to fill in the gaps in knowledge and care. 

This month also marks our 2 year anniversary and we are more determined than ever to reach more people and families than need us! To help us, we're delighted to say we’ve been awarded £19,440 from The National Lottery Community Fund to help us raise awareness about brain aneurysms, reach more people, develop our community and provide essential information, resources and support.

It will also help us to support vital research and highlight the hope that current and future research brings to our community, showcasing advances and developments that could make a significant difference to the people and families that we support. A huge THANK YOU to the National Lottery Community Fund – what a great birthday gift!

Rebecca Middleton CEO & Founder

Make sure you follow us on Facebook to stay up to date with our work and progress.

Here’s how we’re bringing hope to our community

You’re not alone - we’re here for you

As we celebrate two years of progress, we continue to expand our support through a refreshed website, a regular newsletter, social channels, and downloadable guides. We’re here to listen and respond to your needs. Your feedback helps us improve our services. How can we support you better?

We’re talking to the healthcare and medical experts

Our research projects starting later this year aim to identify gaps in patient care and improve the overall experience. If you have a familial intracranial aneurysm and want to help us enhance support for patients, please reach out at support@hbasupport.org

We're filling in the gaps

With the support of Medtronic and Mearns & Pike, we are developing a new patient booklet. This guide, created with input from patients, clinicians, and specialists, will provide essential information and advice for those with hereditary brain aneurysms. Our aim is to empower patients and healthcare providers with a valuable resource. If you'd like to contribute, please contact us at support@hbasupport.org.

We’re talking to the researchers

We’re engaging with researchers to explore genetic links to hereditary brain aneurysms and promote new studies. Join us later this month for a webinar with Prof. Diederik Bulters, who will discuss how his research could improve patient care. This should be ready to view from the 20th September.

We’re here to help

Later this month, we’ll also be sitting down to talk to Kym Winter, Founder of RareMinds, the first specialist, non profit, rare disease counselling service in the UK about how we can manage and navigate the fear that comes with living with our condition. This should also be ready to view from the 20th September, please check back later.

Our Stories

Sharing our stories is a powerful way to connect with people in our community. This month Andy Motch has kindly agreed to share his story.

"I found HBA Support of immense value both in the content and community. Knowing there are others going through the same thing provided me with much-needed support and understanding"

Read more here

"Our mission at HBA Support is twofold: to provide clear, accessible information about hereditary brain aneurysms and foster a community of support and hope - and build a better understanding of this disease, expanding our medical and scientific knowledge.  We're working to ensure that no one has to face this condition alone. We share stories of survival and resilience, highlight the latest research, and provide resources for patients and their families."  2 years on, Rebecca, our founder and CEO, reflects back to how HBA Support began and shares her personal story.

How you can help – get involved and share the hope!

We’re trying to reach as many people as possible so please get involved

• Follow us on social media, share and repost our posts far and wide and ask your family and friends to share too. 

  o Facebook - @HBASupporto Instagram – @ hba_supporto X (twitter) - @hba_support

• Share your story – Personal stories are powerful ways to connect with people. You can read some of our communities’ stories here. If you’d like to share your story, then we’d love to hear from you, whether that on our social channels or via our support@hbasupport.org email.

• Start a conversation – we are always amazed at how many people know someone who has been impacted by a brain aneurysm and how many wonder if there is a hereditary link. Send them to our website or social channels

• Fundraise for us - help us to bring hope on the horizon to as many people as possible by setting up your own fundraising challenge. You can easily set up a donation page as part of our Local Giving page https://localgiving.org/charity/hba-support and clicking the "Fundraise for us" button below our details. We're very happy to help you set one up - drop us a line at support@hbasupport.org. 

• Donate - If you can’t fundraise and you would like to, you could always donate - every penny we raise goes back into developing more support and resources for people and families living with this condition.  We have a team of around 30 volunteers who have kindly agreed to pull on a running vest and take part in the Run Leicester Festival on 13th October and we're trying to reach our £2000 target.

Thank you as always for your support.

If you have any questions or ideas, or to find out more about our fundraising, please get in touch with us here.