Thanks so much for your kind words. It really makes all of the work worthwhile knowing that we have support like yours.
Let me clear up just a few things that might be helpful. First, we have contacted the Payton Foundation. I talked with their director last year. We've read through their materials and looked at their numbers and talked about them at several board meetings. Does the foundation mind if any of you want to participate in the run/walk activities...absolutely not. What you want to be mindful of is the fact that the Payton Foundation does not do any research on cholangiocarcinoma. They have two wings of research, one does research for children's cancers and assistance in that area and the other does "alternative" research. So any money you raise and anything that you do will go to their chosen causes.
Will we ever work with the Payton Foundation? Possibly, it really depends on what happens in this next year or so. As you all know Marion is involved at the NIH, this is very important as we are able to participate in ground level decisions that will affect research and research dollars going to cholangiocarcinoma. We hope to find an advocate that will be able to participate at the NCI for this same purpose. So, that we are working all possible avenues of research dollars for cholangio.
We are looking at a proposal right now that will continue funding for a young researcher who is focused strictly on cholangiocarcinoma. We are working with another foundation made up of Dr's and researchers, they do not focus on advocacy at all. However, they can not get funding through the government without advocacy so we serve different purposes, but together we hope to make some wonderful things happen - however we want all the monies that we grant to be used strictly for cholangiocarcinoma, this is where our passion lies and this is where our focus will remain.
We will be participating in a symposium in April this coming year, which will be bringing together the best and brightest minds in cholangiocarcinoma in the US. We've want to work together to drive what is happening here in the US and we've got to get major cancer centers to work together. Next year we will open the symposium to the world and this is where things will really begin to happen. Once the US can come together and work together we will reach out to Asia, S. America, the UK, everywhere... Can you imagine?
We've just finished translations of our first brochure in Japanese and Spanish, they will be on the website soon and will be downloadable. The Thai version will be coming in the next few weeks. We hope to begin translation of informational pages of the website in the next few weeks as well, first in Japanese and then we'll follow with other languages. We will also be doing general updating of all the pages.
There is a lot to do, but we are committed to making sure that you find the information you need and that you also find the support you need. We appreciate so much all the volunteers who are assisting us to make this happen, we certainly couldn't do it without you.
Much love to you all