Most of our team, trustees and volunteers are affected by PKD, either directly or through a family member or friend.
Tess is CEO of the PKD Charity.
She inherited ADPKD along with 3 siblings (one deceased) from her father (deceased). She had a kidney transplant in 2020 after 10 months on peritoneal dialysis.
She joined the PKD Charity in 2005 as a trustee. She previously worked in marketing for a diverse range of businesses (cosmetics, defence, automotive). In her spare time, she helps friends with IT/internet problems, enjoys gardening and is trying to finish a novel.
Susan Muirhead joined us in March 2019 as the Community Support Manager at the PKD Charity. Susan coordinates a programme of personalised, non-medical support services for individuals and families affected by PKD. These include online PKD Forums, nationwide telephone peer support; topic-based conference calls, webinars and meetups.
Susan has experience of PKD, having seen personally the effects of it as a PKD wife, mother and kidney donor.
Over seven years ago Susan discovered the closed UK PKD support Facebook group which she started to promote and make more active. It has since grown significantly, and each day we welcome new members.
Jane, who has over 30 years experience working with some of the world's leading brands, joined us as Communications and Events Manager in 2019.
Along with her sister, she inherited PKD from her dad - who sadly died when she was only 17 - and has since run the gamut of all things PKD, including brain aneurysm surgery twice and a kidney transplant. She previously wrote about her experiences of living with PKD in a weekly column in The Times.
Jane combines a strong commercial background with her lived experience of PKD to improve awareness and education of the disease, through marketing campaigns, advocacy and Information & Support events, on and offline.
She considers her greatest assets to be resilience, a sense of humour, her son and a cat called Jimmy!