Welcome to our first regular newsletter. We’re glad to have you with us on our journey as we build the UK’s first dedicated charitable organisation for patients and families with hereditary brain aneurysms.
We’ve had a busy start to the year, taking part in important health policy discussions, advocating for better representation of our community in the Houses of Parliament, building our community online, contributing to conferences and health care discussions and building a role our patient voices and experiences to be heard in research.
The momentum is building, and later this year, we’ll be launching our first peer-to-peer Facebook Support Group, new patient webinars, and some UK-first research into the patient experience of getting a diagnosis of a hereditary brain aneurysm. There will be lots more on this exciting work next month.
Finally, we have decided to move from a Community Interest Company (a not-for-profit organisation) to a charity. This will open up more fundraising doors for us and ensure we have the voice and interests of patients at the heart of the organisation. Again, we’ll share more information on this and introduce our amazing Trustees over the next newsletters.
Thank you again for joining us,
Rebecca Middleton CEO & Founder
Make sure you follow us on Faceboook to stay up to date with our work and progress. |
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Awareness and Research
We are delighted to support 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.
Unruptured intra-cranial aneurysms or brain aneurysms are common and found in approximately 3% of the population. Unruptured aneurysms can be treated before they rupture, avoiding harm and trauma.
The aim of the research is to better understand how brain aneurysms occur and when they might rupture, what health issues and genetic issues sit alongside them and potentially develop a new model to better treat and monitor patients with aneurysms.
From this study, a number of other research projects are underway or are being explored which will fill in even more gaps in our knowledge about how familial and sporadic brain aneurysms are formed, how to manage the risks and better screen for them, and how best to treat them.
We’ve been working on the team to support their work as a ‘Patient and Participant Voice Partner’ and are looking forward to supporting this incredibly important work which will impact how future generations are screened, monitored and treated. We’ll keep you up to date with the work as it develops. |
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Support and Resources
Living with a diagnosis or worried that you may be at risk of hereditary brain aneurysms can cause concern and anxiety.
We’ve created a host of resources to help if you or someone you know is worried or looking for more information about the condition. These include free-to-download patient guides about the condition and how to talk to your family following a diagnosis, as well as information about hereditary brain aneurysms.
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
The trainers are on and we’re starting to get excited for our first Team HBA Support fundraising event. 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 to raise invaluable funds for people affected by brain aneurysms.
Every penny we raise will go back to supporting our community. With the funds, we’ll create more information guides, webinars and factsheets to build awareness in the patient community and the clinical and research community too. We work hard to build awareness with the public, patients and the NHS.
If you would like to support us, please take a look at our Local Giving page. We’re grateful for every penny and pound raised. You can also follow us on Facebook and follow our training journey.
Wish us luck!
Team HBA Support at the RUN Leicester Festival | Localgiving |
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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