Staff and Volunteers
Tania Levett
Whilst not having a Mitrofanoff herself, one of Tania’s closest friends does and she became aware of the Charity from her friend. Tania had previously worked in the insurance and banking industries, before taking time off to focus on her family and becoming actively involved in various school PTA and fundraising activities. When Tania learned the Charity was looking for a new Office Manager, she was excited to accept the role and a new challenge; Tania has been bringing her organisational skills and customer-focussed attitude to the Office Manager role since November 2020. She also set up a Foodbank with some friends and continues to volunteer there each week.
Renée Holmes
Renée has been part of the charity for more than nine years and now volunteers her time supporting others within the Mitrofanoff community. Her journey began with a diagnosis of bladder cancer. Although she had initially expected to receive a continent neobladder, a change in circumstances meant she needed an additional procedure — a Mitrofanoff — a decision she now feels grateful for.
Having experienced both the uncertainty before surgery and the realities of living with a Mitrofanoff, Renée brings lived understanding to her role. She knows how powerful shared knowledge can be. Supporting individuals before and after surgery, offering practical advice, reassurance and honest conversation, is what matters most to her. For Renée, confidence in managing a Mitrofanoff can restore independence — and with it, freedom.
With a background in IT, she contributes strategic thinking, problem-solving skills and project experience. She also previously served as Chair of the charity and remains deeply committed to its growth and integrity.
Renée values the close collaboration with medical colleagues and is continually inspired by the resilience and courage of the community she serves.
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Jo Lightning
Jo has been supporting the Mitrofanoff Charity for many years in the role as Legal Trustee but more recently has become a volunteer and monitors our closed Facebook page. Her son had a Mitrofanoff in 2015 and so she has lived experience of caring for someone who has gone through the surgery.
Jo has been a lawyer for all of her career and currently works for a large US healthcare company, leading a team of privacy lawyers and professionals.
Ken Edwards
Ken Edwards is a founding member of Mitrofanoff Support, established in 2010. He travelled nationwide to raise awareness and build relationships with hospitals, medical professionals and suppliers.
He became Chairman in 2012, serving until 2015 before stepping down due to other commitments. Ken now leads Partnership Liaison, working closely with national bodies and sponsors, and remains a passionate advocate for the Mitrofanoff procedure and the charity.
Born and based in Salisbury, Ken is Chairman of the Wessex Stoma Support Group and is actively involved in his local community. He also supports the National Campaign for Access to Disabled Toilets and Signage (‘Not all disabilities are visible’) and volunteers with Colostomy UK.
Jim Kenison
Jim was first diagnosed with bladder cancer in 2008 and after an operation to remove the tumour, the chemotherapy and radiotherapy treatment was initially successful. However, the cancer returned in 2012 and his bladder was removed and replaced with a new one constructed from a piece of bowel and a Mitrofanoff urinary diversion. Jim is fortunate that the procedure has been successful and his lifestyle has changed very little. Since he fully retired in 2019, Jim particularly enjoys joining his cycling group to explore the Surrey countryside.
Jim and his wife Lynda were given a huge amount of support by Mitrofanoff Support, both before and after Jim’s operation. Jim has been a volunteer with the charity since 2013, helping at events and offering support to people who either have or are thinking about having the Mitrofanoff procedure.
