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.
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.
Pseudo Obstruction Research Trust Patient Information Day 2015
On the 9th October 2015 P.O.R.T. held its first Patient Information Day, which was a huge success. It brought together patients, family members and professionals to share knowledge about the CIPO and related conditions as well as for patients and family members to meet others who truly understand, forging friendships and gaining a support network. The day was very informative, with talks from a range of consultants with different areas of expertise, and patients had the chance to ask questions as we had Q&A sessions with the consultants after their talks. This meant knowledge was shared, questions could be asked, but also, patients could feed back to consultants what was most troubling and most important to them, and patients came away with a better understanding of their condition and its treatment and management.
In attendance were P.O.R.T. Chairperson Sue Stewart, and Trustees Sonia Frost and Lucy Watts MBE, with consultants Professor Qasim Aziz, Dr Adam Farmer, Dr Nigel Meadows, Dr Nikhil Thapar, Dr Michael Glynn and Dr Jayne Gallagher, along with P.O.R.T-funded research nurse Laura Brockway, and approximately 60 patients and family members.
Feedback was overwhelmingly positive and we hope to hold more Patient Days in the future.
Chairperson Sue Stewart, her husband Barry and Trustee Sonia Frost and her husband Ian attended a Buckingham Palace Garden Party on Wednesday 22nd May 2013.