We fund research into Chronic Intestinal Pseudo Obstruction, Severe Dysmotility and resultant Intestinal Failure, as well as supporting patients. Help us continue our work – click below to find out how.
CIPO is a disorder of the digestive system (also known as a motility disorder) that effects the movement of contents through the intestinal tract. Find out more by clicking below.
Sue has 4 daughters & 4 grandchildren. Two of her daughters have severe gut dysmotility, Becky, has CIPO. Sue set up the charity with Sonia, in 2006, after they met at The Royal London Hospital.
Sonia Frost
Trustee/Co-Founder
Sonia is the mother of Samuel & “Angel” Emily, who passed away from CIPO complications at the age of 2. Sonia and Sue have become close friends since meeting at the Royal London Hospital.
Dr Nigel Meadows MD FRCPCH
Trustee
Nigel, a consultant gastroenterologist for 30 years, established the department at The Royal London Hospital, and specialised in intestinal dysmotility. He’s a keen supporter of PORT, & it’s funding of research.
Barry Stewart
Trustee
Barry has worked in the Investment & Financial Services industry for over 30 years. He has now retired, so is able to devote more time to raising PORT’s profile, and fundraising.
Ian Frost
Trustee
Ian is ‘Angel’ Emily’s dad, and is a Senior Supervisor at Ford Motor Company where he has worked for the last 20 years.
Kilian Fitzsimmons-Wilson
Trustee
Kilian has a son, Charlie, who has CIPO. Kilian is a software consultant, rugby player & family man! He’s keen to raise funds & the profile of PORT!
Becky Stanier
Trustee
Becky is Sue's daughter, diagnosed with CIPO age 14 and is a Personal Assistant to the Chairman of Southend United Football Club.
Ashlee Johnson
Trustee
Ashlee is mum to Isla, who suffers from CIPO. Ashlee understands what it's like to be a parent of a child with the condition.
Abby Andrews
Trustee
Abby’s daughter Phoebe had severe dysmotility her whole life and spent many years in hospital, suffering from this painful and debilitating condition. Sadly, Phoebe died in January 2022, just after her 13th birthday. PORT supported Abby over many years and she wanted to give back.
Testimonials
Sharing stories, advice and well wishes with others is invaluable when you have a family member with a rare and debilitating illness.
Parent of a child with CIPO
This charity have an invaluable support platform, providing not only incredible contributions to research and treatments, but also providing sufferers and families with a voice.
Patient with CIPO
PORTs efforts provide hope that people living with these conditions might have a better future.
Patient With CIPO
One of the biggest things for me is PORT has given me hope that one day a cure will be found, it gives me comfort that I’m not alone in this battle and it’s given me support and friendship when I’m feeling alone and isolated.