Remembering Tess Harris: A Legacy of Advocacy and Hope
With a mixture of sorrow and fond memories, we honour Tess (Teresa) Harris, who served as CEO of the PKD Charity until she passed away on March 1, 2024. A year has passed, yet her impact on the Polycystic Kidney Disease (PKD) community, family and friends remains as profound as ever.
Tess’s journey as a tireless advocate for PKD began in 2004 when she joined the PKD Charity as a trustee. Always one to roll up her sleeves, Tess's early days in the charity were spent diligently stuffing envelopes and licking stamps to circulate newsletters and other communications aimed at raising awareness and improving education of PKD. Her personal connection to the disease drove her passion, and in 2012, she stepped into the role of CEO, leading the charity with vision, compassion, and determination.
Her influence extended far beyond the UK. As President of the PKD International Alliance from 2011 and Secretariat of the Ciliopathy Alliance since 2010, she played a pivotal role in uniting the global PKD and rare disease communities, fostering collaborations between patients, scientists, and clinicians to drive forward research and treatment advances.
Tess faced her own battle with PKD with remarkable strength, undergoing a kidney transplant in 2020 after a period of peritoneal dialysis.
Despite these personal challenges, she remained steadfast in her mission, leading ground-breaking initiatives such as the PKD App and the formation of the PKD Research Consortium with Kidney Research Uk.
One of her most enduring contributions was her role in helping develop the first KDIGO global clinical guidelines for PKD (ADPKD), published in January 2025. These guidelines are dedicated to Tess in recognition of her unwavering commitment to improving PKD care and her instrumental role in shaping this initiative.
Tess was not only a leader but also a source of comfort and strength to many. Her warmth, empathy, and boundless optimism inspired all who had the privilege of knowing her. She was often the first point of contact for newly diagnosed patients, offering reassurance, knowledge, and hope.
The online memorial we set up after Tess’s passing is filled with heartfelt tributes, reflecting her lasting impact. One testimonial captures her kindness and dedication:
"When I was first diagnosed with ADPKD, I felt somewhat lost, having two young children and not knowing what the future would look like. That was over 20 years ago. Tess was the first person I spoke to at the charity, and she was a guiding light. She was inspirational, leading the way forward but always kind and warm." Sara.
As we mark the one-year anniversary of Tess’s passing, we also reflect on a significant milestone—2025 marks the 25th anniversary of the PKD Charity, which began its journey in 2000. This milestone is a testament to the unwavering dedication of individuals like Tess, who worked relentlessly to advance research, improve patient care, and provide a beacon of hope for those affected by PKD.
Tess’s legacy lives on in the work of the PKD Charity and the countless lives she touched. As we continue her mission, we remain inspired by her courage, compassion, and determination to make a lasting difference.
We miss you, Tess, but your light continues to shine!
Share memories, light a candle, or make a donation in her honour.
If you would like to speak to us about what support we can offer you or a loved one, please visit PKD Support or contact us today and speak to a member of our team.
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