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  1. Salena's brother Colin had Pseudomyxoma Peritonei (PMP).  Sadly, he passed away ten years ago on 22nd November 2013 having been diagnosed on July 1st of that year. He was aged just 33 years.  Salena and her family decided to carry out activities to remember Colin's life ten years after he passed.  Searching the internet, Salena was so pleased to discover that there is a charity supporting people affected by Pseudomyxoma and to see the Salena runs the 5k Great Winter Run for pseudomyxoma Survivor and the Christiewords "Pseudomyxoma" and "Survivor" together.

    As part of her training for the Great Manchester Run in May, which she is running with a friend, Salena took part in the 5k Great Winter Run.  She tells us

    Salena is supporting Pseudomyxoma Survivor

    The 5k Great Winter Run was a difficult one with an impressive route at Edinburgh's Holyrood Park.  It was a great atmosphere and I felt quite emotional, running with Colin's name and picture on my bib for the first time.  I managed it in 27:13.  I'd liked to have done it in 25 minutes but am letting myself off as I'd just turned 42 on Friday and have only been running since last summer!  My friend Caroline was there to cheer me on and was apparently in tears as I set off.  My friends were incredibly fond of my brother too and have been very supportive of my recent efforts to raise funds and awareness in his memory.Salena is supporting Pseudomyxoma Survivor

    - Salena

    Salena also ran the Trailtroopers 10k at Finlaystone Country Park and Glasgow Uni 5 mile Road Races in November.  She is abseiling 140 feet at Old Trafford for the Christie Hospital on March 23rd and undertaking a Race for Life 10k at Hopetoun House, South Queensferry on 4th May, in preparation for the Great Manchester Run.  Phew!

    To show your support for Salena and in memory of Colin, please visit Salena's JustGiving page.

  2. As you probably know, February 28th was Rare Disease Day (think we mentioned it enough times?).  Today's guest blogger, Mel, had the brilliant idea of using Rare Disease Day as an opportunity to raise some awareness of pseudomxyoma peritonei in her workplace.

    Pseudomyxoma Survivor Mel shares her Awareness Raising activities on Rare Disease Day I decided to use Rare Disease Day as a way of raising awareness of pseudomyxoma peritonei (PMP) and raising funds forPseudomyxoma Survivor Mel shares her Awareness Raising activities on Rare Disease Day Pseudomyxoma Survivor at the same time.  I ordered some leaflets and a poster from the web site and used them to create a display in our staff canteen area.

    I created my own poster and "came out" to my fellow work colleagues about having PMP and how rare it is.  The reaction I received from them was overwhelming (which even resulted in me giving them a small talk about it in their lunch breaks!).  Of course, no one had heard of it (apart from one of my colleagues who has a cousin that had his MOAS¹ in October, such a small world!!) and they were surprised that only two hospitals in the UK specialise in treatment.

    I had a lot of sympathetic "We didn't know you were ill" comments to which I gave them my normal reply of "Well, I'm not".  I left them some leaflets to take away and I hope that by bringing it to their attention that they will spread the word and get people the early diagnosiquotecloses they need.  Oh and one other thing… I had over £90 of donations for raising awareness that day which brings my JustGiving page total to over £500 in just two weeks!! 

    - Mel

    We would like to say a huge "Thank You" to Mel and she has certainly given us some ideas about what we could do for the next Rare Disease Day! You can support Mel by visiting her JustGiving page.


    ¹MOAS - 'Mother of all Surgeries'.
    This is a nickname for the big cytoreductive surgery - full peritonectomy and HIPEC. It was thought up by the wife of an appendix cancer patient some years ago via her blog.

  3. We are incredibly excited to announce that we have our very first patron of the charity, following his close involvement with Pseudomyxoma Survivor, Mr Sean Hepburn Ferrer.

    Sean has supported us during our early days and through our development and progression into the strong organisation we have grown to become today, Pseudomyxoma Peritonei survivors are particularly close to his heart as his mother Audrey Hepburn sadly passed away from PMP some 20 years ago.  Following his recent successful invitation to become EURORDIS Ambassador of the year 2014 to represent all rare diseases, we felt that to honour Sean with the title of patron seemed like the most natural progression to further our awareness raising campaign.

    We very much look forward to working together, and want to take this opportunity to thank Sean for all of his support thus far.

    sean gala

    Pictured are our CEO Dawn Green and Mr Sean H Ferrer
    at the recent EURORDIS Gala Dinner in Belgium

  4. The theme of International Rare Disease Day 2014 is “Join Together for Better Care”. As patients and caregivers who have been impacted by peritoneal cancers (Appendix Cancer, Pseudomyxoma Peritonei, and other Peritoneal Surface Malignancies) our organizations have chosen to join together to share a simple message about these diseases.

    This year’s Rare Disease Day Ambassador, Sean Hepburn Ferrer, lost his mother Audrey Hepburn to peritoneal adenocarcinoma in 1993 at a time when she was offered little treatment or hope ( Over 20 years after Audrey Hepburn’s experience, one of the greatest challenges with these diseases continues to be correct and timely diagnosis and access to the Standard of Care: cytoreductive surgery plus hyperthermic intraperitoneal chemotherapy (CRS/HIPEC). In many cases, symptoms are misunderstood for years, and patients are thus less likely to benefit from CRS/HIPEC. This treatment, unavailable to our patient population only a generation ago, has turned what used to be an almost certain death sentence into hope for thousands of patients around the world.

    We share the goal that every patient who presents with the common symptoms of these diseases – abdominal pain, increased abdominal girth, bloating, hernia,ovarian cysts or tumours, and ascites – receive correct diagnosis through tumour marker blood tests (CEA, CA 19/9, CA‐125) and CT scans and be afforded the option to be treated with the Standard of Care, CRS/HIPEC, by a qualified surgical oncologist before any other counterproductive and potentially damaging treatments are attempted.

    We all share the hope of achieving this goal, and by joining together in this statement and sharing this information, we strive for future patients suffering from these diseases to receive the better care that they deserve.

    Signing Entities
    Appendix Cancer Connection
    Be Unintimidated
    The Insurance Warrior
    PMP Awareness Organization
    PMP Research Foundation
    Pseudomyxoma Survivor