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.

In memory of Georgina

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 and is sorely missed by us all.

Who are we?

Susan Oliver

Susan Oliver

Trustee, Chair of the board of Trustees

Susan was diagnosed with cancer of the appendix in 2003, following a ruptured appendix with bowel resection. Since then she has had five operations, three separate cycles of chemotherapy and some radiotherapy. Realising her own diagnosis and treatments could have followed a better path, she is keen to raise awareness and develop patient protocols. Susan is a Macmillan Cancer Voice.
Angela Brook

Angela Brook

Trustee, Secretary to the board of Trustees

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. She’s an integral part of the charity’s day-to-day, co-ordinating our community programme and managing the IT systems.

Anne Salisbury

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.

Alison Allam

Alison Allam

Trustee

Alison lives in York and holds a PhD in Social Policy. She works within health and social care research, as well as holding a strategic oversight role in an arm’s length body responsible for the inspections and regulation of health and care. Alison is a member of the Royal Marsden Hospital uncommon cancer working group. She has an understanding and empathy of the challenges faced by individuals diagnosed with PMP as a member of her family was diagnosed in 2012 and sadly died in 2013.

Clare Fletcher

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.

Patronage

Sean Hepburn Ferrer

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.

With a special interest in rare diseases, Sean is also continuing as Eurordis’ Rare Disease Day ambassador for 2015 following his nomination for the post by Pseudomyxoma Survivor‘s founder, Dawn Green.

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 and Angela and Susan are Macmillan Cancer Voices.

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.

Mr Omer Aziz

Mr Omer Aziz

Consultant Colorectal, General & Laparoscopic Surgeon

Professor Norman Carr

Professor Norman Carr

Director of Research and Consultant Histopathologist

Professor Wim Ceelan

Professor Wim Ceelan

Senior Surgeon and Associate Professor

Laura Lambert, MD

Laura Lambert, MD

Surgical Oncologist and General Surgeon

Mr Faheez Mohamed

Mr Faheez Mohamed

Consultant Surgeon

Professor Paul Moroz

Professor Paul Moroz

Surgical Oncologist and General Surgeon

Armando Sardi, MD FACS

Armando Sardi, MD FACS

Surgical Oncologist and Medical Director

Jason Spendelow

Jason Spendelow

Clinical Psychologist

trustees

patron

medical advisors

%

supporting you

Objectives

Our objectives are focused on support and information, awareness and research.

Information

Find out how we produce our information, about our quality control and how you can help.

Community

If you are looking to share with others or to find a specialist, we have the right places for you.

Pseudomyxoma Survivor is a member of Rare Disease UK
Pseudomyxoma Survivor is amember of the American Society for Peritoneal Surface Malignancies
Pseudomyxoma Survivor is a member of Cancer 52, the common voice for less common cancers
Pseudomyxoma Survivor is a member of RareVoices Australia
Pseudomyxoma Survivor is a member of RareVoices Australia
Pseudomyxoma Survivor is a member of Eurordis, Rare Disease Europe
Fundraising Regulator
9 Ilmington Close, Hatton Park
Warwick Warwickshire
CV35 7TL United Kingdom
0300 3020050