Hereditary Brain Aneurysm Support

Wonderful news alert! We have been granted charity status by the Charity Commission. This is a significant milestone for us and is the culmination of a lot of hard work. It will unlock many more funding opportunities and ensure continued good governance and best practices in our operations. We are incredibly grateful to our founding trustees and everyone who has supported us on this journey. Find out more here https://lnkd.in/eXiRPfai

Meet our volunteer, Chandana Veshala, who created our new Living with Health Anxiety Guide. Chandana is a masters student studying Genomic Medicine at the Queen Mary University of London where she is applying her expertise to clinical genetics, especially in connective tissue and vascular genomics. She is passionate about translating genetic insights into enhanced patient care, especially for rare hereditary disorders. Thank you so much! Without wonderful volunteers like Chandana we would not be able to develop our support materials that are so vital for our community. If you think you could help us is some way, please get in touch. You can help us make a difference. Thank you! See the guide here https://lnkd.in/eCT-T7ke

Last Sunday was our first ever community fundraising event and I'm still buzzing from an incredible day with brilliant supporters! Team HBA Support, a group of nearly 30 amazing runners, took on the challenge of the Leicester 10K or Half Marathon. And what a team, we had PB's galore, and more importantly plenty of smiles and laughs along the way. Personally it was the first time I have ever 'raced' and my first ever 10K distance and I loved every second - including the killer final hill! The atmosphere, team spirit and support was truly amazing. Thanks to everyone's hard work, we have now doubled our fundraising target which now stands at just over £4K. Every penny will make a huge difference and help us support more patients and families, and support more research. So many people to thank, it was a very proud day for HBA Support. Thank you to all the runners, volunteers, supporters and cheerleaders! It was a very special day which raised much needed funds and great awareness. Hereditary Brain Aneurysm Support

We're excited to update you on the next steps for the Vascular Voice Network. On the 19th September we joined 20 stakeholders from organisations and charities supporting people impacted by vascular conditions, to discuss the development of a network that brings together vascular disease support organisations, to look at ways we can collaboration to share information, research, discoveries, resources and best practices. After a morning of positive discussion, we're excited to move onto the next steps. We'll hopefully be meeting again in December so we'll keep you up to date with its progress. If you'd like to be involved please contact us at support@hbasupport.org or visit https://lnkd.in/eghaRXgZ Genomics England Genetic Alliance UK

Fear and anxiety go hand in hand with brain aneurysms. Whether they run in your family or you have a suspicion they do, or you have been told you have one which will be monitored, worry is natural emotion and symptom. But how do you live well with those feelings? Last month, we took time to sit down Psychotherapist, Founder & Clinical Director of Rareminds, Kym Winter, to tackle these tricky emotions, hard challenges and look at practical and positive ways individuals and families could work through and live well with an aneurysm. We are incredibly grateful for Kym's experience and expertise and, as someone who manages worry and anxiety everyday, I found it useful and full of insights and guidance. I'm confident our new webinar will be useful to our community and will be that reassuring voice in a world full of risk scores and brain scans. https://lnkd.in/es5VVm8r The new Wellbeing Hub on the Rareminds website is also full of useful and reassuring information, enabling rare condition patients to live as well as possible. I would urge anyone with a rare condition who is interested in supporting their mental health to take a look. https://lnkd.in/eqAyTYN7 Hereditary Brain Aneurysm Support

Phew, Brain Aneurysm Awareness Month is over and what a month! We've been to 2 conferences and presented at 1, helped establish a national Vascular Voice Network, shared our story on BBC Radio 4, produced a research blog, supported a national genomic research programme, shared 2 new patient stories, recorded 2 webinars (with another planned for October), took part in a podcast, appeared in the national media, recorded 3 patient story interviews (watch this space, new video coming out in October), taken over Rare Revolution Magazine's socials and kicked off 2 patient focused national research projects. Finally, to support our "Finding hope on our own horizons - how to live with fear and health anxiety" webinar, we've launched our new, free, "Living with Health Anxiety Guide that looks at the important worries people might have, to do with our communities condition and offers advice and tips to live with these understandable anxieties. Find it here https://lnkd.in/ejHd5RTq Please like and share our post for one more push to reach as many people who need us as possible. And finally, a huge thank you! Thank you for your support, your follows your likes and your shares. Together we’re spreading the word and ensuring there is Hope on the Horizon. #BrainAneurysmAwareness #HBAShopeonthehorizon

A fantastic day yesterday at the inaugural Vascular Voice Network meeting. We are so grateful for the energy, support and ambition in the room as we came together for the first time to discuss how to create a collaborative network where rare and common vascular condition organisations can share research, best practices, and community experiences. So many great ideas, challenges, needs and passion for moving this forward to create a common voice for vascular conditions and groups - regardless of size - to amplify and elevate all the voices impacted by vascular disease today. We are grateful for the diversity of views from charities, umbrella organisations and NHS bodies - large and small - who took time out of busy diaries to attend and kick start the idea of the Vascular Voice Network. Thank you. A huge thank you to Genomics England and Genetic Alliance UK for their amazing support. Thanks for being by our side as we grew the idea and watched it fly for the first time yesterday. Now time to take stock of all the valuable ideas and develop our next steps... watch this space. Charles Steward GDL MCIPR PhD Anne-Marie Hamilton Deb Lancaster James Duboff Daisy Bradbury Martina Sardelli Nick Meade Emma Middleton robert sayers THE BUTTERFLY AVM CHARITY LIMITED Caroline Davies The Aortic Dissection Charitable Trust Nicola Miller Circulation Foundation Helen Evans Angela Cas Victoria Hilton Rick Thompson Hereditary Brain Aneurysm Support Beacon for Rare Diseases RARE Revolution Magazine

🤔 Did you know: • There could be as many as 320,000 individuals in the UK who are affected by Familial Brain Aneurysm Syndrome – that means brain aneurysms run through generations and impacts many lives in one family. • There has been little support available for people affected by Familial Brain Aneurysm Syndrome (or hereditary brain aneurysms) in the UK, with huge information and support gaps. • At the moment hereditary brain aneurysms are not being counted as a condition, it is just the symptom that is counted. We're on a mission to bring hope on the horizon to as many people affected by hereditary brain aneurysms as possible, creating information and support – ensuring their community understands that they’re not alone. Find out more hbasupport.org/information

We’re talking to the healthcare and research experts to help make a difference. Our own new research projects are beginning later this year and we hope these will shine a light on the gaps and improvements needed in the patient pathway as well as examining the patient experience. We're committed to ensuring patient views are reflected in the NHS care pathway. We'll also be working with the Neuro teams to understand their processes and support during screening, diagnosis, treatment and ongoing care. Watch this space for more updates as our project progresses or sign up to our newsletter here. https://lnkd.in/ed6QDkrD #BrainAneurysmAwarenessMonth #BrainAneurysmAwareness #HBASHopeOnTheHorizon

Our mission to reach as many people who need us as possible continues and a huge thanks to BBC Radio 4 Woman's Hour for allowing Rebecca to share her story about aneurysms and the impact on her family. https://lnkd.in/e_dpFWUB (40.50 - 47.30) Many thanks to Nuala McGovern for her sensitivity and kindness today. We’re here for anyone affected by brain aneurysms with hereditary links. Please visithttps://lnkd.in/eP-KYXD6 for more information. #bbcwomanshour #bbcradio4 #womanshour #brainaneurysmawareness