Forum Replies Created
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
Rick can probably respond best to this as he has been working with the company to get the bracelets. They should be here anytime. As soon as we get the shipment we’ll let you know.
You have shared an amazing journey with all of us. Thank you!
I hope there is a huge Christmas party in heaven with all of cholangio patients we’ve lost, and they are thinking warmly about all of us just as we are of them.
Maryanne you are an amazing woman. Joe could not have been loved and supported more.
A quick update on Peter. His surgery is complete. Three hours of preparation and 2 hours of actual re-routing surgery. They are hopeful that he’ll be able to eat and drink now. The recovery will take some time and he is resting.
I did get your message Gavin. Sorry I’ve been out of town the last two weeks, but am firmly planted until the end of the month. I’ll be sending the next batch of brochures out soon.
Karen, great news! Thanks for distributing the brochures. Every little bit helps.
We would love to talk with him. Let me know if you need some of my cards so he has all of our contact information.
Yes, please be sure to take a photo.
Anyone who would like some brochures to distribute locally, please just e-mail me at firstname.lastname@example.org and send me your mailing address. We’ll get those right out to you.
If for some reason you have requested brochures and they haven’t come, please send me another e-mail.
Thanks so much!
Absolutely! Why don’t you give me a call. Email me at email@example.com
Thanks so much for getting these out to the offices, where the patients can find them.
If you will send me a mailing address at firstname.lastname@example.org – then I can get those right out to you.
Good report Marion. The next newsletter will have a full report of all the conferences that the foundation attended this year and the schedule for next year.
Also, wanted to add that I spoke at length with the Cyberknife people who were at the conference as well, in two weeks they will have a fully interactive website for patients, so that you can get all your questions answered and see how the cyberknife works right from your home.
It seems so silly to me, that this kind of thing brings tears to my eyes, but I remember when Mark was sick and I felt like my life was running on adrenaline, we had heard about photodynamic therapy and what a revolution it was. I was very excited about it. I spoke to several physicians about Mark’s case, I spent a lot of time searching the web but the information was not complete. I was reading articles and research, etc. to find out if Mark would be a candidate for this procedure, for some reason I just couldn’t pin anyone down, every physician wanted to see him before they would tell me if he was a candidate for the procedure. It was so frustrating. Finally, I spoke with one Dr. who said to me, “You said your brother has intrahepatic cholangiocarinoma, well photodynamic therapy only works for patients with extrahepatic.” All this research and time spent, when I really just needed a straight answer. 3 years later, things are so different. I feel so grateful that these companies are putting all of the information out there and that we can get it all compiled here on the website so that you don’t have to waste any precious time.
Cyberknife asked us to please make sure their link would be on our website – like they had to ask
All of the donations to the foundation ARE tax deductible.
This was a mistake and of the 100s of times we went over this brochure I can not believe we some how didn’t catch that – Love you Karen. We only printed enough this first run to go to ASTRO. We’ve been so focused on the medical information and making sure it was perfect, somehow we missed that error. We had a couple of other small things to change as well.
Rick will make the changes and our new printing will be out in 7-10 days. So, those of you who will be helping distribute, you can expect to see your packages arriving soon after that.
Thanks to everyone so far who has asked to help distribute the brochures, I was so excited by your response and every thing you do helps in a big way.
Thank you, thank you & thank you Karen especially, for catching that.
Had an e-mail from Professor Lodge this morning. Here is the information.
The Department of Health ran into some resistance from senior liver surgeons that there was not a need for national centers in the UK. This was felt to be a case of territorial/empire wars and while the Department of Health recognizes this they did not feel they could go against the advice of senior liver surgeons in the area. They have decided to run an audit of all the centers that say they are working on cholangiocarcinoma to find out what they are doing and what the results are. Professor Lodge will be able to make another bid for the centres in 2 years and thinks he will be successful.
In answer to Scotland being left out of the picture. The Department of Health only includes England and Wales. He said Scotland has its own much better funded health system. Professor Lodge can take patients from Scotland if they ask for a second opinion but the Department of Health will not fund them – they would be funded by the Scottish Health Office and reciprocal arrangements are in place already at the government level.