Announcing the Passing of Tess Harris: A Tribute to Her Enduring Legacy in the Fight Against PKD

It is with profound sorrow that we announce the passing of our beloved CEO, Tess (Teresa) Harris, who peacefully passed away on March 1, 2024, at the age of 68.

Tess began her journey as a tireless advocate for Polycystic Kidney Disease (PKD) 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.

From the outset, Tess exhibited visionary management and an unwavering dedication to enhancing the lives of those impacted by PKD. Fuelled by a personal connection to the disease, she seamlessly ascended to leadership, serving as the PKD charity CEO from 2012.

Over the years, Tess demonstrated an unparalleled commitment to advancing PKD research, marked by her pivotal role in fostering collaborations among scientists, clinicians, and patients, driving innovation and progress in the quest for effective treatments and, ultimately, a cure for PKD.

Alongside her role with PKD Charity in the UK, Tess served as President of the PKD International Alliance from April 2011, expanding her influence within the global PKD community and championing international partnerships to advance research and support initiatives worldwide. As Secretariat of the Ciliopathy Alliance since 2010, Tess also played a crucial role in raising awareness and advancing research into ciliopathies, further amplifying her impact within the rare disease community.

Tess’s battle with PKD resulted in a kidney transplant in 2020 following a period of peritoneal dialysis. This served as a poignant testament to her unwavering commitment to the cause, and she remained as stoic and committed as ever.

Despite these personal obstacles, Tess's dedication persisted, and she initiated numerous pioneering initiatives for the charity, including the conception, development, and implementation of the ground-breaking PKD App in 2022. She was instrumental in establishing the newly formed PKD Research Consortium, aimed at boosting research and development in PKD. Additionally, as a key contributor, she played a pivotal role in developing the first PKD clinical global guidelines (under review) by KDIGO, further showcasing her impact on standardising PKD care.

Beyond her professional accomplishments, Tess will be remembered by friends and charity supporters for her warmth, empathy, and boundless optimism. Her infectious smile and unwavering energy brought solace and support to all who crossed her path, especially those for whom Tess was the first point of contact after receiving a PKD diagnosis.

She is survived by her sisters Fiona and Bernadette, brothers St. John and Christopher, as well as several cherished nieces and nephews whom she held dear. Tess's beloved sister, Justina, passed away twelve years ago.

As we grieve the loss of Tess, we honour her enduring legacy—a legacy characterised by courage, compassion, and an unwavering dedication to improving the lives of others.

Our charity will continue its planned activities, furthering Tess's mission to support, raise awareness, and drive progress in combating PKD.

On behalf of the Chair, the trustees, the staff, and the PKD and ARPKD research board, we thank you for your support at this time.

Enquiries: Please contact Jane Pugh: