About Hereditary Brain Aneurysm Support (HBA Support)
Hereditary Brain Aneurysm Support is in the very early stages of development. The founder, Rebecca Middleton is on a journey to build awareness, signpost information and give peer support to people who would like to learn more about this rare genetic condition.
The reason I am on this mission is down to my beloved Mum. She died 12 years ago, a few days before her 60th birthday, due to a ruptured, double brain aneurysm. I subsequently learnt over the years that five close relatives had died or are struggling to live with an aneurysm – including my maternal grandmother who died at the young age of 38 of a brain aneurysm while pregnant. I underwent testing and found that I too have a brain aneurysm and was diagnosed with familial brain aneurysm syndrome. I had surgery for this three years ago. At the start of my genetic journey, the information and support was bleak and very limited. I want to turn this around and support patients and their families curious or diagnosed with a familial aneurysm syndrome. I strive forward for my daughters and nieces who will need to undergo lifelong testing from adulthood. Through research, we know this condition runs stronger down the maternal line.
We have big ambitions, and we are just at the start of our journey. Through Beacon (formerly Findacure), I now have a wonderful mentor who is helping me shape the CIC. Professionally, I am a PR Practitioner with 20 years of international experience and have an excellent understanding of the communications landscape and all that needs to be done to reach out and engage with our key communities and stakeholders. As a patient advocate with six years of experience of being embedded at the heart of a genomics, data and science-led organisation, I understand the need for further research and patient experience being reflected within it. I have sat on two major public consultation on developing attitudes to genomics and now have the pleasure of joining the steering committee for the Newborn Initiative NHS Steering Group, led by Professor Dame Sue Hill. I’m keenly aware of the need for championing the patient voice and providing a voice for those seldom heard.