In Memory and Gratitude for Ondine Sherwood

Long Covid SOS exists because of the vision, determination and courage of our co-founder, Ondine Sherwood. We will always be grateful to her. Long Covid SOS just wouldn’t exist without her.

When Long Covid SOS was established in 2020, Ondine was among a small group of patients determined to ensure that people living with this frightening new illness were seen, heard and taken seriously. At a time of fear and uncertainty, she persistently advocated to help give hope and a voice to thousands of people affected by Long Covid.

The trajectory of the awareness of Long Covid shifted when Ondine helped secure recognition for people living with Long Covid on the international stage. She was instrumental in the first meeting between Long Covid patient advocates and the World Health Organization, helping to establish the principle that patients must be integral in policy discussions, research and care. It marked a turning point for those still unwell, it allowed hope. That commitment to meaningful patient involvement continues to shape our work today, and that spark of hope is still alive.

Following Ondine’s death in March 2025, we took time to reflect on her extraordinary contribution and the legacy she leaves behind. While we miss her greatly, her vision continues to inspire our work every day.

She combined determination with warmth, humour and compassion, making everyone she met feel valued. She saw potential in each of us that we often couldn’t see in ourselves, encouraging us to believe that, despite what Long Covid had taken away, we still had so much to give. She inspired us to look beyond our own illness and channel our energy into something bigger than ourselves: a community determined to improve life for everyone living with Long Covid.

As we continue campaigning for better care, greater understanding and biomedical research into Long Covid, we do so knowing that we are building on the foundations Ondine helped create, and we know she’d be proud of us.

Thank you, Ondine. Your legacy lives on in Long Covid SOS, in the lives of the many people you helped, and in every person who finds hope, purpose and belonging through our community. Long Covid SOS wouldn’t be the close-knit, determined team we are today without you. We miss you deeply, but we are all better for having known you.