I absolutely love to see the energy running through the discussion boards. No offense could ever be taken by the board. We see patients and caregivers who are frustrated and want to see positive things happen with this cancer. We know, because we are experiencing the same thing.
We are always keeping up with the posts and what is happening on the website. I personally do so less now as I am working with the day to day details of running the foundation and this takes up a significant amount of time.
Jeff, Marion and Peter volunteering to be moderators on this site is a major reason that I was able to focus more on those things that will allow the foundation to push forward.
Marion Schwartz has been working with Sara Hinkley as a patient advocate for several months and has just taken over as Director of Patient Advocacy, this allows Sara to take on other responsibilities that we were not able to focus on. Marion is seeing amazing things happen as she has been invited as an advocate to participate in several cutting edge cholangiocarcinoma conferences. You will see her report in the upcoming edition of the newsletter which we hope will be out in the next couple of weeks.
We are preparing a new section of the website right now under "Get Involved" it is the "Volunteer Section" There we will list several opportunities to volunteer. If you don't see something that interests you in that section, then send me an e-mail, tell me what you'd like to do, what your interests are or if you'd like to branch out and learn something new.
Every one involved with this foundation is a volunteer and we appreciate the gift that each has given whether it be time, talent or funds.
Lainy, I think sending the letters would be fine. I'd like to check with the other board members, but I don't believe that there would be any conflict. I agree with IreneA that it will be more impactful if you also include some information about what orphan cancers are and how they are completely overlooked and under served by the NIH and NCI which is where the big money is for cancer research.
Jeff, thanks as always for ignoring your own burdens and lovingly serving those around you.