Patient Advisory Board

Several months ago, under the umbrella of PC Project, a number of PC patients formed a Patient Advisory Board (PAB). Each member of the PAB is a leader of a working group made up of other PCers. They share ideas through emails and on a monthly conference call. The PAB working groups, while having different specialties are quite interrelated. A good example is the Newsletter Working Group whichrecently put out the first ever newsletter produced by PC patients. They did a super job. And while the newsletter group did all the hard work, they utilized members of other working groups to help with articles. It was a perfect example of one team doing its job, but using other teams to help. After all, we really are one big team anyway.

I’m on the Patient Outreach working group with seven other PCers. Just this past month, we’ve been brainstorming and sharing ideas for the upcoming 2008 Patient Support Meeting in Scotland. We’ll present these ideas to the PAB during the conference call in January. I’m just amazed at the ideas and thoughts that are coming through. I’ve been involved with a lot of the planning of past patient meetings, but having the advice of these powerhouse PCers is incredible. They think of things I’d never think of, giving a perspective not just as PCers, but as parents, as non-English speakers, as repeat attendees and so on. They are intelligent and thoughtful planners. Our team is spread throughout the world and we communicate mostly through email. Their ideas and comments are invaluable. In a way, my group is like a big focus group that helps determine needs of PCers and their families. We have a whole list of projects, but we’re just tackling them one at a time.

There’s so much that can be done to help the PC cause. While the progress in PC research continues, I can’t begin to say how nice it is to be involved with so many other PCers who really care about all people with PC and their families. It is empowering to PC Project to have the help of so many talented people. Their greatest attribute, in my opinion, is a desire to serve. That’s the only requirement anyone really needs to be of help anyway. I hope that any PCer reading this who wants to be involved will contact PC Project and ask to join one of the patient working groups – currently the working groups are: Newsletter, Patient Outreach, Fundraising as well as a local arrangements group for the Patient Support Meetings for 2008 and 2009. At this point, it’s really not a huge time commitment, but it is a great way to be involved and feel part of things.