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’.
- 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?
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.
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 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.