PORT – Charity Of The Year
JA has designated the Pseudo Obstruction Research Trust as its charity of the year, following a company-wide vote to determine the winning charity. The organisation holds a special place in the heart of our CEO, Kilian Fitzsimmons-Wilson, who serves as a trustee and whose son is personally impacted by their work. We are enthusiastic about collaborating on various fundraising events throughout the year in support of this cause.
The Pseudo Obstruction Research Trust (PORT) is a UK-based charity that is dedicated to improving the lives of people affected by chronic intestinal pseudo-obstruction (CIPO) and related gastrointestinal disorders. This rare and debilitating condition affects the digestive system, causing severe pain, bloating, nausea, vomiting, and constipation. It can lead to malnutrition, weight loss, and even death in severe cases.
PORT was established in 2006 by Sue Stewart (chair) and Sonia Frost (Trustee) in memory of Sonia’s daughter, Emily Jasmine, who passed away in 2005 from complications of CIPO. They wanted to raise awareness of the condition and fund research into better treatments and a cure. The charity’s main objective is to support research that will improve the diagnosis, treatment, and understanding of CIPO and related conditions. They also aim to provide support and advice to patients and their families, and to raise awareness of the condition among healthcare professionals and the public.
So, why does PORT need support? There are several reasons why this charity is so important and why it needs the support of individuals and organisations:
CIPO is a rare and poorly understood condition. There are currently no effective treatments or cures for CIPO, and many patients struggle to access appropriate care and support. PORT is working to change this by funding research into the causes and mechanisms of CIPO, as well as developing new treatments and interventions that can improve patients’ quality of life.
PORT is run by volunteers. The charity is staffed entirely by volunteers, many of whom are patients or family members affected by CIPO. This means that all donations go directly to supporting research and providing support to patients and families. However, it also means that the charity relies on the generosity of donors to continue its vital work.
There is a lack of funding for research into rare diseases. Rare diseases like CIPO often receive less attention and funding than more common conditions, which can make it difficult for researchers to make progress in developing new treatments and cures. By supporting PORT, donors can help to fill this funding gap and support research that can make a real difference to the lives of patients and families affected by CIPO.
PORT provides crucial support to patients and families. In addition to funding research, PORT also provides a range of support services to patients and families affected by CIPO. This includes providing information and advice, running support groups and events, and advocating for the needs of patients in the healthcare system. These services are crucial for patients and families who may feel isolated and unsupported in dealing with this complex and often challenging condition.
Keep following JA (the trusted provider of payroll solutions for CIS, umbrella and PAYE payroll and Contractor Accounting) to see what future plans we have for fundraising for this important cause. We enjoy seeing our developers coming out from behind their computer screens and getting involved in these challenges.