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  1. We are absolutely thrilled to announce that our wonderful patron, and son of our iconic PMP angel Audrey Hepburn, has been invited by EURORDIS to continue his Rare Disease Day Ambassador role into 2015.

    Having been appointed as Rare Disease Day Ambassador 2014 by our very own CEO Dawn Green, Sean had the following to say:

    quoteopenOn January 20, 1993, my mother, Audrey Hepburn, passed away from a rare type of cancer – Pseudomyxoma adenocarcinoma. When we found out that the only tentative treatment was a chemotherapy (5 fu leucovorin) available since the 60s, we, her family, truly connected with the fact that this disease was not a priority for Big Pharma. The most precious person we knew could not be saved.

    So, when Dawn Green, CEO and founder of the ‘Pseudomyxoma Survivor’ Charity and herself a one in a million cancer survivor, nominated me to be the ambassador for Rare Disease Day 2014, I knew that, not only did she have this rare cancer but also a rare ability to transform darkness into light and smile in the face of adversity.

    ‘Rare’ is a word most often used to convey the same values as  ‘precious’… unique… valuable. And if one adds up all of us precious beings that suffer from a ‘rare’ disease, the number is staggering – 60,000,000 and counting. The way each of us deals with what ails us is always unique and therefore, I feel it is quite easy for any of us to relate to ‘rarity’… that rarity that comes in those moments when we must truly face life and adversity by ourselves.

    When my mother visited Africa for UNICEF she would often say; “we cannot save everyone… but the knowledge that someone is coming to their rescue… that we care as a society is ultimately as important…” It is in this spirit that I accepted this invitation.

    The gift of Audrey Hepburn to the silver screen… to style and, ultimately, to humanitarian work was ‘one in a million’… and so was the disease that took her from us.

    I am honored to stand, in her graceful place, and shine a light on a delicate group of individuals who, nevertheless, in sheer numbers are a force to be reckoned with.

    quotecloseThank you,

    Sean Hepburn Ferrer

     

     

    sean gala

  2. We are delighted to announce that following recent collaborations with the PMP Research Foundation based in the USA, we can now officially reveal that we have achieved the status of partner organisations.

    Our individual organisations aims and objectives and our passion for the cause compliment each other beautifully, and we are delighted to be joining forces.

    The PMP Research Foundation awards grants for research and organises educational programs worldwide.

    For further information on the work that PMPRF does please click on the following link:

    http://www.pmpcure.org/

    image (1)

  3. Baltimore firehouseWe are thrilled to report that our very own founder and CEO Dawn Green has been invited to participate in this year's "Heat it to Beat it" event in Baltimore!

    Pseudomyxoma Survivor has also kindly been offered an awareness table at the event and Dawn has also been invited to give a small presentation before the event gets underway!

    The wonderful Dr Sardi organises this 2.2mile sponsored walk yearly in conjunction with the Mercy Medical Centre for awareness, education and research into peritoneal carcinomatosis.

    We feel incredibly honoured to take part, feedback from Dawn to follow over the weekend!

     

    It's not too late to sponsor Dawn ....
    https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=1108044&supId=412192213.

    To find out more about Heat it to Beat it, please visit http://heat-it.org.

     

  4. We have been having a discussion within our support group about the fact that the internet will focus on the more 'sensational' rather than the more 'mundane' (for want of better words as mundane certainly isn't a word we would generally apply to the treatment of any of pseudomyxoma patient). So we asked for some of the support group members to share their stories just to show that there isn't always complications and sometimes things just turn out well.

    Mel shares her story with Pseudomyxoma SurvivorMel tells us her story:

    Mel shares her story with Pseudomyxoma SurvivorI was discharged from the Basingstoke and North Hampshire Hospital just 13 days after surgery. I did spend a few days in my local hospital two weeks later due to blood clots on my lungs but five months down the line I have not looked back. I would make the same decision to have the operation even after having it and knowing what I do now. I now have no evidence of disease Mel shares her story with Pseudomyxoma Survivor(NED) and am back to normal.

     

     

    Christi shares her story:

    Christi shares her story with Pseudomyxoma SurvivorI had CRS/HIPEC on October 2009. I spent three days in ICU, due mostly to a previously unknown allergy to morphine. I spent 11 days as an inpatient, recovering from mostly said allergic reaction and getting my system running after said issues. I was up walking a lot on day four. The naso-gastric tube was a pain, but I was back eating without any more issues than I had pre-op at 11 days. I returned to work with just as active a life at three months and surely figure I wouldn't be here today without it. I have been aChristi shares her story with Pseudomyxoma Survivorble to care for and sadly see my parents pass as well as see my sweet daughter start junior high, aside from a few more gray hairs, splotchy complexion and the menopause.

    So you see, it isn't all doom and gloom. There are people who have been treated relatively uneventfully and are here to tell the tale. There will be more of these stories to come. You can also read more on our Survivors' Stories page.