Hereditary Brain Aneurysm Support

Many thanks to the British Neurovascular Nurses Group for allowing us time today to introduce a new project that we need Neuro Nurses, Neurosurgeons, Neuro Interventionalists and Neuroradiologists support with. ? We want to work with UK neurovascular teams, as well as people diagnosed with familial brain aneurysms, to develop a practical guide that will give people balanced information to help them understand their diagnosis and their options and signpost them to further trusted resources. ? We hope this will help in clinic by: ·????????Reducing patient anxiety and isolation ·????????Helping patients arrive better prepared and informed ·????????Supporting and reinforce your clinic conversations ·????????Addressing common questions ·????????Giving patients reliable information to share with their family members It will only involve an hours virtual workshop with a small group of colleagues, so if you would like to get involved, please email [email protected] before December 31st 2024 or visit https://lnkd.in/dAeMwNqv for more information. Please share across your networks to anyone you think can help us. Catherine Lamb, Samir Matloob, dawn roberts, Andy Motch, Anna Topaz, Bethany Lumborg, Jon Pike, Rebecca Middleton

Have your voice heard! We need your help. If you’ve been affected by a brain aneurysm, you can often feel that your voice and experience isn’t heard, or your condition and feelings aren’t really understood. We have heard this said by many patients and we want to change this. We’re currently working with Cardiff University on two projects that are looking at the patient/family experience of screening and the experience of those living with a brain aneurysm. We’re also, for the first time, putting together a patient guide to support people and families who have been diagnosed with a brain aneurysm or suspect they have a pattern/risk in their family. Your voice matters, your voice can make a difference. Please share this across your networks to get as many voices heard as possible. Find out more here https://lnkd.in/e_MrJfr9 or email [email protected]

HBA Support—a patient-centred organisation providing support and resources for those affected by hereditary brain aneurysms—has announced its new status as a registered charity. Hereditary Brain Aneurysm Support Rebecca Middleton

Incredibly proud and honoured to share the Trustee Board with these skilled and dedicated people. Hereditary Brain Aneurysm Support will go from strength to strength with their expertise, commitment and strategic focus. Looking forward to the journey!

You may have seen our wonderful news last week, that we have achieved charity status! As it's Trustees' Week, it's the perfect time to introduce you to our seven dedicated founding trustees who are at the heart of our mission to support those affected by brain aneurysms in the UK. It's so important to us to have a holistically expert team supporting from all sides. ? Our patient-led board includes Rebecca and Emma, who are motivated by their family’s experience. Rebecca founded HBA Support to fill critical gaps in information and support for those with hereditary brain aneurysms. dawn roberts, a fellow patient, joined early on, courageously sharing her journey and helping to guide our patient-centred focus. ? We’re proud to have a powerful clinical team on board. Professor Diederik Bulters, a Consultant Neurosurgeon and Professor of Neurosurgery at University Hospital Southampton, is the UK’s most published expert on brain aneurysms and related vascular conditions in the UK. As lead investigator for the ROAR Study, he spearheads research to predict aneurysm rupture risk and is looking to advance genetic research to improve patient outcomes. Bethany Lumborg, a Genetics Associate within the NHS and co-chair of the GenPAN Network, adds her expertise in hereditary brain conditions while pursuing an MSc in Genetic and Genomic Counselling. Their contributions are invaluable in guiding our medical and clinical direction. ? We're also grateful to have Lee Judson as our Treasurer. Lee is a Financial Director and Chartered Management Accountant with 15 years working in senior finance roles leading private equity backed and US listed organisations.?His approach of fostering strong working relationships across teams will support HBA Support’s strategy, financial control and sound management. ? We’re privileged to have Mark Boulding on our board, who joins us with over 20 years of experience in international pharmaceutical marketing and strategy. He has extensive experience in senior positions in the not-for-profit sector and is currently mentoring charity leaders. We’re grateful to benefit from Mark’s business and governance expertise. ? Thank you to all of our amazing trustees, for making this work possible! ? If you would like to find out more about our volunteering opportunities, please get in touch by emailing [email protected]. Find out how you can get involved here https://lnkd.in/ehwVrzxY

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 [email protected] 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