Would like 2 send letter like this 2 Oprah but don’t want to misinform

I think we should try to raise awareness of cc. Maybe that will get more research done into the causes and treatments of this disease. After all, who ever heard of mesothelioma before activists and lawyers publicized the illness?

The above graph represents the survival percentages, and is taken from the NCI SEER website: http://www.seer.cancer.gov. The graphics did not turn out great, but if you look closely, you will see Liver and intrahepatic bile duct cancer is 3rd from the bottom. Pancreatic cancer is last.

Agreed with Kris and Joyce – Pancreatic Cancer has a slightly worse prognosis than cholangiocarcinoma.

I have some good graphics that might be helpful to include in the letter. Let me see if I can make these accessible online.

Hi lainy…. No, I wasn’t taking any post as stepping on toes at all. I only do that when I’m dancing. Ha! I just wanted to keep you all informed and take the opportunity to let you know there is a lot of activity behind the scenes, and we were about to do some volunteer searching. I love all the motivation.
Bless Ya!
Jeff
P.S. Got to run my son to the dentist. Sure will be glad when he gets his driver license back. Maybe he’ll slow down and keep it this time. If Not he’ll have to get a bike and pedal til his heart is content.

OMG JEff, I sure hope no one takes an offense to this as we meant in NO way to put out the feeling that no one was doing anything. It is our own frustration with the way CC is treated that got us going. I also remembered last night about the Professor who was on Oprah that just passed away (darn can’t think of his name now) although he did not expound on how we are orphans. I will contact Stacie and see what she thinks as we surely do not want to step on any toes. Everyone on the Board and founding members have done a great job getting us to where we are now. I have been the chief of many things and I know how hard it is to get to where we are. I will contact Stacie. As always you are right with us and we thank you for that!

Hi Sophie,Lainy, Irenena……….. I admire your spunk and motivation of your ideas concerning ways to raise funds to help individuals and bringing awareness to the public of this relentless cancer. However, Cholangiocarcinoma as a few months ago, gained legal non-profit organizational status. We do have a Board of Directors, President, Legal, Grant writer, Patient advocate, Moderators and so on. For those who are new to the site this is a young and moving forward organization that has many plans to highten awareness all over the U.S. . In fact there is behind the scene preparation in progress as we speak, to launch a Volunteer Program to assist with the many projects that are being put in place. As indiviuals we can write letters, donate to who we want, and so on. However as a Non-Profit Licensed Organization, there are certain legal responsibilities and procedures involved. I personally feel individual personalized letters are great and certainly if you would like to mention you are a member of this Organization, that surely is not a problem either, but a coordinated effort with a professional presentation and promotion from a now recognized Non-profit Organization, will have a greater impact for all members for sure. Both can take place. Like I said this is a young Organization just begining to make an impact for all. Please look at the above menu under Foundation and you’ll see the begining of who is who within the organixation. Although the building of this site itself is very time comsuming, the actual structure and members of the foundation is alive and working for us as we speak. We have individuals attending all the conferences and symposiums that has anything to do with Cholangiocarcinoma, Oncology Conventions, alternative therapy,etc. and making our organization well known. In other words we have and are continuing to place this Foundation on the map to be recognized and heard.
I guess as a Moderator, it would be remiss if I didn’t bring all this to your attention. Above under Foundation there is a drop down menu. On it is a tab “Contact US” click on that and you will be provided a direct link to the Executive Director, Stacie Lindsey. I would encourage you all to email her directly and say, I have some Ideas and HOW CAN I VOLUNTEER? I’m not sure if a Volunteer Coodinator has been appoint yet, but we are looking for volunteers. For instance, this site is coming together slowly but perfectly, being refine as it goes. A volunteer is doing this, which takes time.
Once again, I admire your motivation and I’m with you all the way. Currently, I’m volunteering as a Moderator, patient advocate as needed and participant in the EFT study Program and I’m open to attending and supporting any fund raising functions as well. Please do—-contact Stacie Lindsey and let her know your valuable skills are just awaiting to be used. I’m sure she has a list of things to be accomplished ,if she just had some skilled or semi-skilled volunteers to do and or coordinate specific tasks.

Go get-em tigers!
Jeff G.
P.S. go get-em tigers ? where did that come from? You guys got me all excited.

Are you sure about the pancreatic statistics? I think it is the reverse.

Great letter though.

Kris