About Pseudomyxoma Survivor
Pseudomyxoma Survivor is a non-profit organization, run by patients and caregivers. We have a thriving support community providing emotional support to anyone whose life has been touched by pseudomyxoma peritonei (PMP) as well as appendix cancer and other peritoneal surface malignancies. As these diseases are so rare, having a global presence gives the community a scale where it is able to offer genuine support and advice around the clock – both emotional and practical. Patients, caregivers and families have joined together to create an online ‘family’.
Together we:
- offer practical and emotional advice on managing symptoms and all aspects of living with this rare disease
- manage a one-to-one buddy system
- fund small grants to help patients and caregivers with the impact of treatment
- support research
As a non-profit organisation, we’re completely dependent on voluntary donations. We’re too small to have offices or staff; the charity is run entirely by volunteers. Our patron is Sean Hepburn Ferrer. Sean’s mother, Audrey Hepburn, passed away shortly after being diagnosed with PMP. Sean also has a special interest in rare diseases more generally and has been Rare Disease Day Ambassador for Eurordis and NORD, the European and North American rare disease organisations.
Who are we?
Susan Oliver
Trustee, Chair of the board of Trustees
Angela Brook
Trustee, Secretary
Angela was diagnosed with Stage IV ovarian cancer in March 2010. Following a total hysterectomy, this diagnosis was changed to PMP. She had cytoreductive surgery and HIPEC in 2011 and was diagnosed with a recurrence in 2014 and is currently on "watch and wait". With a background in IT management and an interest in website design, Angela initially began helping with the Pseudomyxoma Survivor website.
Anne Salisbury
Trustee, Treasurer
Anne spent many years working for HSBC and for the last nine years has been working for Leeds University Business School as the Relationship Manager on the Goldman Sachs 10,000 Small Businesses programme. Anne has been a friend of Susan’s since 2010 and having recently given up full time work, she is now giving her time to support the charity.
Clare Fletcher
Trustee
Clare was diagnosed with cancer of the appendix in 2010, following an operation to remove ovarian cysts. She had her operation at Basingstoke in 2011 and was diagnosed with a recurrence of PMP in 2020. Clare experienced surgical menopause at 25 years old and is interested in connecting with women who have to deal with menopause and its effects at a younger age than normal. With a background in recruitment and partnerships, Clare is keen to utilise these skills to link Pseudomyxoma Survivor with local charities in the North East of Scotland.
Tim Brill
Trustee
In 2013, Tim had surgery to remove a mucinous appendix neoplasm. Six years later, he was diagnosed with PMP and had cytoreductive surgery and HIPEC in Basingstoke. He also had hospital stays for stomach obstruction and inguinal hernia surgery. Tim, an avid hiker, runner, and swimmer, is interested in exercise as a crucial part of post-surgery recovery, both physically and mentally. With a corporate communications background, he aims to support the charity’s programs in raising awareness of PMP among targeted organizations and the wider community.
Patronage
Sean Hepburn Ferrer
Patron
As the elder son of Audrey Hepburn, Sean Hepburn Ferrer has been aware of pseudomyxoma peritonei for many years. Audrey Hepburn, arguably one of history’s most iconic actresses, style icons and Humanitarian Ambassadors, lost her fight to pseudomyxoma peritonei originating from an appendiceal adenocarcinoma in 1993 after a short illness. Treatment has progressed a great deal in that time with the advancement of cytoreductive surgery and HIPEC.
Participation
‘Taking part‘ is to us a vital part of our patient advocacy programme. We focus on advocating for patients as a group rather than individuals and achieve this through attending relevant congresses and conferences where we can represent the voice of patients and inform medical professionals about patient views and perceived gaps in treatment. We are proud members of Eurordis, the European Rare Diseases organisation, and are the founding host organisation of the pseudomyxoma peritonei support community on RareConnect, a project by NORD and Eurordis. Additionally, we are members of Cancer 52.
People
The real emphasis of our community is you. As patients, caregivers and supporters, you are the reason why our organisation exists. It’s your continued support and consideration that allows us to grow and to support those affected by pseudomyxoma peritonei worldwide.
Each day we see firsthand how patient advocacy and peer support helps in a real way. We see people supported both in a group environment, through our Facebook and RareConnect groups, and getting 1:1 support through our buddy scheme. Patients and caregivers ourselves, we appreciate that such support is there for us when we need it ourselves. The number of people we have in collaboration offering help, support and advice is the real evidence of our success.
Medical Advisors
The information on our website is written by patients and reviewed by our medical advisory board of PMP and appendix cancer experts. The board has been established to support Pseudomyxoma Survivor in all its work but with particular emphasis on supporting the development of information resources for patients, families and carers.
Professor Norman Carr
Director of Research and Consultant Histopathologist, retired
trustees
patron
medical advisors
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supporting you
In memoriam
Dawn Green
Dawn Green was diagnosed with pseudomyxoma peritonei after initially being mis-diagnosed for some time. She had surgery at Basingstoke followed by systemic chemotherapy and further surgery. Looking for peer support, she found that there was very little available and no patient support organisation in the UK. She started by sharing her own story online and fundraising through cake bakes and car boots to raise enough money to found Pseudomyxoma Survivor in 2011. Dawn died in May 2016.
Georgina Morgan
Georgina Morgan was diagnosed with appendix cancer after initially being mis-diagnosed with ovarian cancer. She had surgery at Basingstoke followed by systemic chemotherapy closer to home in Newcastle. Having been a General Practioner since 2014, Georgina was keen to raise awareness amongst the public and medical profession of this rare disease and ensure patients get specialist referral. On becoming a Trustee, her background in senior clinical leadership, skills and her passion for making a difference soon made her an integral member of the team. Georgina died in June 2021.
