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 is 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 is Rare Disease Day Ambassador for Eurordis and NORD.
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 is Rare Disease Day Ambassador for Eurordis and NORD, the European and North American rare disease organisations.
Where did we come from?
Pseudomyxoma Survivor was founded by Dawn Green following her own diagnosis with PMP. Struggling to find support herself, Dawn was keenly aware that there was a lack of emotional support for anyone with the disease. Supported by friends and family, she established Pseudomyxoma Survivor to fill the gap.
Shortly after the charity was registered, Angela started to support Dawn by reworking the website which had originally just been Dawn’s personal story and later became a trustee. Early in 2015, after attending a meeting with Cancer 52, Susan decided she wanted to become more involved with the charity and became a trustee. The organisation evolved into an online global family of PMP survivors and caregivers, recognised internationally for its patient advocacy and awareness programme. Sadly, Dawn passed away in May 2016.
Since 2011, Pseudomyxoma Survivor has worked to improve the lives of the living with PMP, as a patient or as a caregiver. Supported by Lyn, Amanda and Salena as trustees and by our volunteers, this is what we continue to do and we can do this because of your continued support.
Who are we?
Trustee, Chair of the board of Trustees
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. With a background in IT management and an interest in website design, Angela began helping Dawn with the Pseudomyxoma Survivor website. She’s now an integral part of the charity’s day-to-day, co-ordinating the buddy scheme and managing the IT systems. Angela is also a Macmillan Cancer Voice.
An Associate Member of the Chartered Institute of Management Accountants, Lyn has worked in various finance-related roles in industry. Following a change in career direction, she began teaching accountancy courses within the further education sector. More recently, she established a private training company delivering professional accountancy training. She is also treasurer to The Fellowship Singers of Shirley, a local community choir and registered charity.
Trustee, Online Support
Amanda became aware of pseudomyxoma peritonei (PMP) when her mother was diagnosed in August 2014. Shortly afterwards she found the charity and was keen to give back the help and support her family received through Pseudomyxoma Survivor. She has been volunteering with the charity as administrator for the Facebook Support Group. Amanda is a lecturer of Mathematics in Further Education and a mother of two young children.
Salena became aware of PMP when her brother Colin was diagnosed in July 2003. Sadly, Colin passed away just a few months later and Salena couldn’t find any support for herself or other family members. She was planning some events to commemorate the 10th anniversary of his passing and came across Pseudomyxoma Survivor. Salena brings with her a wealth of experience in both fundraising and allocating grants. Recently appointed as the Partnership Development Manager for the Family Fund in Scotland, she lives in Glasgow with her two sons.
Sean Hepburn Ferrer
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 Dawn Green.
‘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.
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.
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.
Our objectives are focused on support and information, awareness and research.
Find out how we produce our information, about our quality control and how you can help.
If you are looking to share with others or to find a specialist, we have the right places for you.