As you are no doubt aware, we are racing towards PBC Day 2018 and I wanted to raise your awareness of plans for this year in the hope that you get involved.
There are a number of initiatives this year that will hopefully reach all over the world, and we would love for you to be involved.
1) Host an event on or around PBC Day. We know movement is medicine. So, we use PBC Day to organise picnics, sponsored walks, etc. We have a number of events in all sorts of places and would love for you to join us. If you attend an event, make sure you take a picture of everyone willing to be photographed with your hands up for PBC!!
2) Yep, that is right. This year's campaign is #HandsUp4PBC
One of the things we are asking people to do is to record themselves speaking for 1 minute on PBC and posting it on social media, tagging 3 other people daring them to do it too!!
youtube.com/watch?v=Ia5TE_E...
Here is a short video explaining what you can do. Patients, families, friends, carers, clinicians, pharma and the general public can all be involved. You just need to talk about your experience of PBC: it could be living with fatigue (which is the point of the hands up part); it could be looking well but feeling rubbish; it could be people not understanding; it could be just about learning all about this disease because a friend has it.
We all have a part to play, so let's get #Handsup4PBC trending for this year. I shall be starting on 13th Aug with my first vdeo making sure I record often, tagging different people into the post, challenging them to share their experience. If we all do just one video and tag three people, sharing it on facebook, twitter, etc, can you imagine how many people we can reach?!?!?!?!? Literally millions...
3) There will be various posts, infographics, etc that we shall be sharing so feel free to post and to share.
You will gain the most from PBC Day if you join the Foundation, as you will find out where events are or you can be supported in hosting one of your own!!
I look forward to seeing all your posts!!
Yours,
Robert.