CVST Foundation UK was established to raise awareness of cerebral venous sinus thrombosis (CVST) and to ensure that no one affected by this condition feels alone. When we speak of “survivors,” we mean not only the individual living with the condition, but also the families, friends, and loved ones who are deeply impacted by it. CVST does not just affect one person—it affects entire support networks, often in ways that are not widely understood or recognised.

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Our aim is to create a space where individuals and families can connect, share experiences, and support one another through what can be an incredibly challenging and isolating journey. From our own experience, we understand how important it is to speak with others who truly understand—those who have faced, or are currently facing, similar circumstances.

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One of the greatest challenges we encountered was the lack of clear, accessible information about CVST. The condition can affect speech, mobility, communication, and a person’s ability to care for themselves, yet there is limited guidance available to help families understand or prepare for these changes. When Shaun was first diagnosed, we found that awareness of CVST was limited, largely due to its rarity. This often led to uncertainty, particularly around whether CVST should be classified as a stroke. While it is sometimes described as such, this is not always consistently recognised, which can affect the pathway to appropriate care and support.

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Through the Foundation, we hope to contribute to greater clarity, awareness, and understanding across both the public and healthcare communities. While CVST is recognised as a form of brain injury, there remains a need for more consistent recognition and support pathways to ensure individuals receive the help they need from the earliest possible stage.

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We are also committed to connecting with other families who are navigating similar experiences. Shaun’s journey changed all of us—our family, our daily lives, and our perspective. It taught us that when one person suffers, those around them are also profoundly affected. No family should feel isolated or unsure where to turn.

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This is why the Foundation exists: to provide guidance, to offer support, and to create a community where people can share their stories and feel heard. By sharing our story, we hope to encourage others to share theirs. Together, we can build understanding, raise awareness, and ensure that everyone affected by CVST knows there is support, compassion, and hope available.