As we head into the summer months, we’re taking some days to rest before we launch into an exciting and busy autumn period. We have four research and patient engagement projects getting underway, our awareness month scheduled for September as well as our first community fundraising event in October and our charity application in progress.
Your support for us as the UK’s first dedicated charitable organisation for patients and families with hereditary brain aneurysms, is much appreciated and we will be calling on our community to get involved, share their views and help us shape future care and policy.
Hope on the Horizon is the theme for this year’s awareness month where we will be throwing a light on the exciting scientific, genetic and patient experience research. We’ll be sitting down for a chat with the team from the ROAR study, a UK multi-centre collaboration which aims to better understand brain aneurysm rupture risk. It is the first study of its kind in the UK and the biggest longitude research study of its kind. We’ll also talk about research and our increasing knowledge on our genetic understanding of brain aneurysms.
We’ll also be hosting patient webinars on ‘living with fear’ – something that our community does every day - and working with a partner to look at the impact of the menopause on aneurysms.
And finally, we’ll be marking our two-year milestone and looking back at our journey marking significant progress and community growth as well as looking what is ahead for us, including our transition from a not for profit, community interest company to a registered charity.
Rebecca Middleton CEO & Founder
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Exciting Research and Awareness Projects Ahead
We are incredibly excited to announce that thanks to funding and support from Medtronic, a global leader in medical technology, services, and solutions - and Costello Medical, a leading research company and experts in the analysis, interpretation, and communication of clinical and health economic data - we have two exciting projects underway that will have a meaningful impact on patient care.
With Medtronic, we are creating a patient booklet written by our community – patients and people living with hereditary or familial brain aneurysms – and NHS neuro specialists who support patients. The accessible patient guide will provide essential information, tips and advice. It’s a collaborative project and we hope to work in partnership with patients, NHS clinicians and a specialist agency to develop content and produce a guide that can be used by patients and neuro specialist up and down the country.
Working with our research partners Costello Medical, we’ll be taking a closer look at the current pathway for patients with suspected familial brain aneurysm syndrome; identifying gaps and inconsistencies in current practice across the UK’s Neurocentres – and highlighting any improvements that could be made.
In addition, we’re supporting two fantastic students from Cardiff University with their Master of Science Genetic Counselling studies. They will be looking to talk to people affected by familial aneurysms to learn about their lived experiences.
We need you!
Help us to make a difference! If you have been diagnosed with a familial intracranial aneurysm - that means you have an aneurysms and a strong family history of them - and would like to help us improve the patient support available, then please get in touch at support@hbasupport.org. We have opportunities for you to chat to friendly researchers, be part of these exciting projects and have your voice heard. By understanding and sharing the patient experience we can help influence change, improve patient care and help make a difference. Please contact us today! |
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Support and Resources
Whether you’re affected by brain aneurysms or want to support someone who is, we're here for you.
If you or someone you know is worried or looking for more information about the condition, we've created lots of resources to help. There is detailed information about hereditary brain aneurysms as well as downloadable free patient guides about the condition and how to talk to your family following a diagnosis. You'll also find quick links to further support.
HBA Support is a non-profit organisation, and donations are essential to funding our work, allowing us to keep building free information and resources.
Donate today to help us develop more resources for people and families living with the condition. |
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Fundraising and Community
We were thrilled to congratulate our supporter Kealey Ball on her successful ascent of Mount Snowdon on 21st June 2024. Kealey’s journey was deeply personal, motivated by her partner's and family members' battles with brain aneurysms. Kealey raised £287 for HBA Support. Thank you Kealey!
Following in Kealey’s footsteps, on 13th October 2024, a team of our supporters and friends will be running the Leicester 10k and half marathon. The race is our first ever group community fundraising event. Please support us by sharing the link to our fundraising page on your social media channels, and by donating if you can (https://localgiving.org/fundraising/team-hba-support-at-the-run-leicester-festival/) Every penny will raise awareness and provide support for people affected by hereditary brain aneurysms.
It’s not too late to join us. There are still a few places left, so contact charlotte@hbasupport.org if you’d like more information. Or if you can’t make it to Leicester but would like to run, walk, climb, dance or bake to raise funds on our behalf, we’d love to hear from you. |
Thank you 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. |
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