P.O.R.T. is delighted to be able to say that Chronic Intestinal Pseudo Obstruction is included as a condition on the 100,000 Genomes Project, which we hope will lead to finding the underlying cause of CIPO and hopefully lead to treatments. Here is some information about the project and what it may mean for patients with CIPO.
We’ve had some fantastic support recently! Here’s a little fundraising update and a look ahead to the rest of 2017 in terms of fundraising.
In 2016, P.O.R.T. put out a research call with help from Bowel and Cancer Research, and we received three proposals. In November, the Bowel and Cancer Research Committee and P.O.R.T decided to proceed to the next stage with one research proposal. This has gone out to peer review, and if successful, P.O.R.T. will be funding another exciting piece of research.
Would you like to get fit and do a walk that’ll make a big difference to a small charity? Well you can! The Colourthon, a walk around Southend, Westcliff and Chalkwell takes place on Saturday 1st July 2017, setting off at 6pm from Chalkwell Park. You have the option of the main event, the Moonlight Colourthon, a half marathon (13+ miles), or the shorter Twilight Colourthon, a 10k (6.1 mile) course, taking many of the same sights as the Moonlight but over a shorter distance.
P.O.R.T. gather walkers every year for the Colourthon, so you’ll be part of the #TEAMPORT and we will provide a P.O.R.T. embroidered sash and blue tutu skirt for the event – but better still, gather a group of your friends and have a great time out whilst raising money for P.O.R.T. in the process! You will need to raise sponsorship, and there are bonuses for the person with the most money raised, and the best dressed.
Our six-year old son Alby became ill in June 2015, with what seemed like a tummy bug. He was still vomiting (mostly bile) and in severe pain with a bloated tummy three weeks later . The doctors assured us it was just a bad tummy bug, but our gut instincts told us something else was going on.
P.O.R.T has teamed up with A Bear Named Buttony to provide our P.O.R.T. children (and some adults) with a Buttony Bear, which mirrors their recipient, with buttons in place of tubes, and stoma bags just like the person. We are very grateful to Jenny Gow for supporting us and our remarkable children. The Bears are more than just for comfort, however. Not only do they bring comfort to a child, having a teddy just like them, but they can be an aid to explaining bags and tubes to their siblings, friends or to children in their school.
We are very proud to be able to have Buttony Bears to bring comfort to the children we support.
P.O.R.T. Trustee Lucy put together an Impact Report for our 10th Anniversary, looking back on the first ten years of P.O.R.T’s work. We are exceptionally proud of our charity and how it has progressed over the ten years, with our research and equipment funding total reaching £320,234 – and with an exciting potential research project, and another potential piece of work for P.O.R.T. to fund both in the proposal stages.
You can read our 10th Anniversary Impact report here.
There is a shortened version which is available here.
Charlie was born 4 days overdue on the 28th August 2008. Due to prolonged labour with no progression and a drop in Charlie’s heart rate, he ended up being born by emergency caesarian section.
“Some people never meet their hero I gave birth to mine”