Celebrating One Year of Hereditary Brain Aneurysm Support: A Journey towards Hope and Holistic Care
The Hereditary Brain Aneurysm (HBA) Support team is pleased to celebrate a significant milestone - the completion of our first year.
This journey began with a simple yet crucial mission: to provide essential support, information and understanding for those affected by hereditary brain aneurysms. Looking back over the past year, we’re so grateful for the progress made, the support we’ve received and the positive impact we've had on the lives of individuals and families navigating this challenging path.
CEO and Founder, Rebecca Middleton, said: “It’s been a first amazing year, and all made possible thanks to the expert and dedicated team at Hereditary Brain Aneurysm Support and our committed supporters. We’ve learnt so much over the past year and made so many friends, not least those on our patient panel who have trusted us with their stories. We’re grateful for their time and expertise.”
Finding the Light: The Birth of HBA Support
It was in the winter of 2015 that Rebecca faced a life-altering moment - a diagnosis of a brain aneurysm and familial intracranial aneurysm syndrome. Amidst uncertainty, Rebecca turned her personal struggle into a beacon of hope for others grappling with similar challenges.
Every rare disease patient seeks a community of understanding, but Rebecca encountered a dearth of research and information about her condition. This scarcity extended to peer support and condition-specific patient groups, leaving her feeling isolated. Despite the seriousness of the disease - one that had claimed the lives of her mother, grandmother, and others - Rebecca felt unsupported and left to navigate her journey alone.
Building Bridges and Advocating for Research
Fuelled by the belief that countless others faced similar struggles, Rebecca founded HBA Support in September 2023. This pioneering, patient-centred, not-for-profit organisation aimed to provide knowledge and assistance to those dealing with familial brain aneurysms. HBA Support also aims to raise awareness, advocate for affected individuals, and ultimately enrich and safeguard lives.
HBA Support's journey began with thorough research, including a Targeted Literature Review (TLR), to identify gaps in understanding the condition. This foundation laid the groundwork for a deeper exploration of the patient experience, culminating in collaborations with MSc students at Cardiff University's School of Medicine and the proposal of MSc Dissertations in the field.
Addressing Care Gaps: A Collaborative Approach
Through its strategy work, HBA Support scrutinised the patient journey, uncovering gaps from suspicion to diagnosis and treatment. This exploration revealed the absence of holistic care, prompting the HBA Support team to create resources to guide those diagnosed with, or at risk of, hereditary brain aneurysms. Future collaborations with professional bodies, including the British Society of Neuroradiologists, aim to provide patients with a clinical resource tailored to their condition.
Rebecca said: “Through our strategy development and the creation of our first research framework, we’ve seen the gaps in care, knowledge and research. We’re now working to plug these holes. We’re incredibly grateful to our amazing MSC students who have helped us put together our patient-facing guides and taken the initiative to create a patient-focused support that just hasn’t been there before.”
The organisation has advocated for the inclusion of clearer guidance on the familial characteristics in NICE guidance and clearer recommendations for young adults transitioning into adulthood with hereditary brain aneurysms.
A Collaborative Vision for Better Care
HBA Support's dedication to collaboration drove partnerships with groups like the Brain Aneurysm Foundation in the US and the Rare Diseases and Emerging Therapies team at the Department of Health and Social Care. The organisation's involvement in membership networks like the Genetic Alliance and Neurological Alliance facilitated peer support and knowledge exchange.
Partnerships with clinical and research communities will strengthen the cause and fundraising and engagement is ongoing to progress this.
David Salmon, HBA Support’s Marketing and Engagement Manager, who helped develop the mission and direction of the not-for-profit, said: “Our vision is for people affected by this rare disease to have greater support, information, and knowledge. By raising awareness and having a deeper understanding, we can improve patient outcomes and ultimately save lives through better access to preventative treatments, peer support and understanding.
We can only do this by working with patients, clinicians, researchers and the wider health and rare disease community. Everyone we’ve spoken to and worked in our first 12 months has been incredibly welcoming and supportive, sharing opportunities and inviting us to conversations so that we can build awareness and understanding of the condition. We’ve developed an incredible and diverse network that shares our vision, and I’m looking forward to keeping this momentum going so that we can all make a huge impact for everyone affected by the condition.”
Friendship and Learning
Rebecca said: “Along the way we have made many new friendships and partnerships and built the foundation for our ongoing success. As we plan for September’s Brain Aneurysm Awareness Month, we look forward to working with members of our patient panel, Prof. Julian Barwell, a key supporter of our work and many of our partners and peers to continue our mission to increase awareness, knowledge and reach out to more patients and families. We’re grateful for their support and always understand that there is much to learn and more to do.”
A Journey of Hope and Holistic Care
Rebecca's journey, from fear to life-saving surgery, led her to believe in the power of discovery and research. HBA Support aims to replace fear and uncertainty with hope and knowledge, providing support and resources to those affected by hereditary brain aneurysms.
And, as HBA Support commemorates its first year, its commitment to enhancing patient care and knowledge remains unwavering. The journey from diagnosis to advocacy has been one of resilience, collaboration, and a dedication to building a community of support. With eyes firmly set on the future, HBA Support continues to be a source of hope, a driving force for change, and a beacon of light for individuals and families facing the challenges of hereditary brain aneurysms.