There has been so much going on here and we haven’t shared it all with you so here is a round-up of some of our latest stories!
Rare Disease Day Ambassador 2014
Following a nomination by Pseudomyxoma Survivor’s Dawn Green, Sean Hepburn Ferrer was announced as Rare Disease Day Ambassador 2014. Dawn and Angela were privileged to travel to Eurordis in paris to meet with Sean and the lovely people at Eurordis. It was a fascinating day for us both. As well as meeting new people, we found out more about Eurordis and the work that they do promoting awareness of rare diseases across Europe.
You can watch a video of Sean on our Youtube channel.
In the press…
Some of our PMP/Appendix cancer family have been featured in stories around the globe recently. Debra’s story was featured in the Daily Mail in the UK. She tells of her journey to get the right treatment for her cancer. Unfortunately, since this story was published, Debs has been told the cancer is back and she is investigating further treatment options.
Keith was rewarded with a maintenance facility being named after him. A core member of our PMP family, Keith’s story was reported in several newspapers and featured on his local village website in Illinois. You can find out more by visiting the Team Keith Facebook page.
Following on from our amazing fundraising events this year, there is a Valentines Ball on (naturally) February 14th. To find out more, including how to get tickets, please visit our events section.
Salena is carrying out a series of fundraising events in memory of her brother, Colin, who sadly passed away from pseudomyxoma peritonei ten years ago. She has already completed some events and has plenty left to go. She will be supporting both Pseudomyxoma Survivor and The Christie hospital.
Salena tells us:
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.
You can support Salena via her JustGiving page.
We are currently fundraising to support our initiative in conjunction with Penny Brohn Cancer Care. Finding out you have cancer is a pretty lonely experience; finding out you have a rare cancer even more so. To that end, we are working with the PBCC team to host a weekend where PMP and appendix cancer patients can meet up and discuss the impact cancer has had on their lives as well as learn about how to better deal with that impact. To help support this vital initiative, please visit our JustGiving page.
Phew! That’s a whirlwind tour of what has happened at Pseudomyxoma Towers. If we have missed out anything or you have anything to add, just let us know.