I am delighted to announce that I have been invited to join the PSC Support Committee!
The charity has been a huge support to me since I was diagnosed with Primary Sclerosing Cholangitis in 2006 and I am overjoyed that I am now part of the team! As you know, I am extremely passionate about raising awareness of organ donation and PSC but my passion also extends to helping anyone who is affected by either of those things in any way and also helping find better treatments and ultimately A CURE for PSC! Now that I am on the Committee I am able to officially be a part of doing all of those things!
You can read all about what the charity does HERE but basically, PSC Support plays an essential role in finding treatments and A CURE for Primary Sclerosing Cholangitis by providing funds (which have been provided by charitable donations) for research and we are getting closer and closer to that point with each new bit of research we fund!
The charity also offers essential resources and accurate information about PSC to anyone who needs it. This is hugely important with conditions as rare and as misunderstood as Primary Sclerosing Cholangitis because often patients and their families are exposed to inaccurate information which only causes unnecessary worry.
It also provides places for people affected by PSC to connect with each other such as annual meetings (which include talks from guest speakers about the latest research etc.) an online forum, a Facebook group and a support line. When you are diagnosed with any lifelong condition, it can be very worrying and can feel very lonely, so to be able to connect with others who are going through the same thing as you and who understand how you feel is absolutely priceless, it makes a huge difference!
The Committee is there to ensure the decisions made about the charity’s activities are in line with our objectives and in the best interests of PSCers. This can range from how significant charity resources are used (eg time and money) and to validating and ratifying strategic choices from the Trustee body (eg how we can best support important projects). The team is made up of a great mix of wonderful people, you can read all about them HERE.
I am so honoured that I have been invited to be part of the Committee and I can not wait to get started! 2015 is going to be a great year for PSC! 😃