Topic: Would like 2 send letter like this 2 Oprah but don't want to misinform

It seems to me it would be great if we could get a powerful figure to present our cancer on a public forum.  I have drafted a letter to Oprah, but I am not nearly as experienced or knowledgeable as most of you.  What do you think of this?  In addition, I don't want to destroy any credibility built up on this site or give any kind of misinformation.   What do you think?  Can you add anything to the letter, delete anything or should I just hang it up?  Who knows?  Something like this might appeal to her and she might ask a bunch of you with continual incidents on her show.  I'm too emotional.  I'd cry the whole time so I wouldn't be good. 
Prayers to all of you,
Sophie

Dear Oprah,

My name is ___________, and I am a teacher who after 35 years was looking forward to my retirement and having grandchildren.  Instead I was rewarded with a rare cancer, Cholangiocarcinoma; it

Re: Would like 2 send letter like this 2 Oprah but don't want to misinform

I think it is a powerful letter and you should send it.

Re: Would like 2 send letter like this 2 Oprah but don't want to misinform

Hi Sophie --

I think this is a great letter. I am sure Oprah gets a lot of letters like this so who knows if they all get read, but it is very well done.

I might throw in one more paragraph and note that CC is one of what they call Orphan Diseases because it affects so relatively few people -- that might give them an opprtunity to look at covering it from a perspective as one of several Orphan Diseases, rather than focusing on just this one.

It's an excellent idea. Thank you for thinking of it.

Irene

Re: Would like 2 send letter like this 2 Oprah but don't want to misinform

Hi Sophia. Just the other day I posted a note on this site that we should go on Oprah! I think your letter is outstanding but what is better than 1 letter? More letters all sent in together! I also stated in that post that we should get bracelets, ribbons etc. We need to start getting more pro-active! If Oprah does not contact us we can try someone else. But I really think more letters and we can send them to one person who would send them all to Oprah.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Would like 2 send letter like this 2 Oprah but don't want to misinform

To Lainy and Irene,

Irene....great idea.  I already added it to the letter.

Lainy, I read your post and got the idea from you and decided to roll with it.  What should we do?  Should we all send the same letter to Oprah and everybody....Congressmen?  News Stations

How do we get everyone on this site to get a copy of the letter we decide to send, sign it and get it mailed?  Somebody else might write a better letter than mine.  I am thinking it might be better if we all bombarded her with the letters instead of all of them in one because she probably has so many readers.  I defer to you guys.  You are the ones who keep me from crying not as often as before. 

My prayers for you all,
Sophie

Re: Would like 2 send letter like this 2 Oprah but don't want to misinform

Well, I think since we are all with this site it is OK if we make a collection and send them all together. I feel it would be a bigger impact than if they received them piece meal and perhaps some would even get lost. Not sure if we have to clear this with the Board but perhaps a Board Member can tell us. So. my suggestion is that anyone who wants to write a letter should. Perhaps you and I can volunteer to be "co-producers" of this.  I could represent the caretakers and  you could represent the patients, since that is our real life role. We could set a deadline to receive the letters via e mail. The letters have to be thought out really well so would like to give people a little time on this. Can you imagine sending like 50 letters in a bunch to her?  Feel free to email me on this. Who knows this could be the start of something BIG! Mmmm reminds me of a song.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Would like 2 send letter like this 2 Oprah but don't want to misinform

So Lainy, you think every person should write his/her own letter version.  I'd collect the patients' letters and send them, and you'd collect the caretakers' letters and send them.  I can go with that.  Serving as chairperson in more than I can count departments in school and committees for 35 years,  it was a big headache to get teachers to do things like this.  Nag! Nag! Nag!  Then half of them just didn't turn submit anything.  Perhaps though in an instance so important as this, everyone will rise to the occasion.  Count me in.  Can you get it cleared with the board?  I didn't even know there was a board.

My prayers for all of you,
Sophie

Re: Would like 2 send letter like this 2 Oprah but don't want to misinform

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

Great letter though.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Would like 2 send letter like this 2 Oprah but don't want to misinform

Nice letter, Sophie.  I'll write one myself.  I have stayed fairly healthy throughout this thing, but I haven't had any investigational treatment options presented to me.  I feel like a red-headed step-child.  Its hard to advocate for myself, because I'm still working and trying to keep up with the kids and the house and the job.  I have little time and less energy to research treatments or diets or anything that could help prolong my life.  It's so hard when I think of what will happen to my kids when I'm gone.  I still have my parents.  They live close and have been very involved with the children their whole lives.  But they won't last forever.
God bless,
~ Lisa

Re: Would like 2 send letter like this 2 Oprah but don't want to misinform

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.

Take it to the Limit,One More Time! (Eagles)

Re: Would like 2 send letter like this 2 Oprah but don't want to misinform

I would be happy to help. I am a caretaker, but also an RN with a masters, in case credentials might get her attention. Not that it helps with this disease.

Re: Would like 2 send letter like this 2 Oprah but don't want to misinform

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!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Would like 2 send letter like this 2 Oprah but don't want to misinform

P.S.  Kris I also have always heard that Pancreas Cancer is right there with CC.
        Everyone hold on the letters, we will advise after I contact Stacie.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Would like 2 send letter like this 2 Oprah but don't want to misinform

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.

Take it to the Limit,One More Time! (Eagles)

Re: Would like 2 send letter like this 2 Oprah but don't want to misinform

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.

Stacie

Re: Would like 2 send letter like this 2 Oprah but don't want to misinform

You guys are the best!   I think Irene's idea on focusing on all Orphan Diseases is wonderful, and my statistics about pancreatic cancer and cc might be off.  I couldn't find any specific information about that. 

Lainy and Jeff - I am deferring to you in all matters.  From now on, I'd like you to call me Grasshopper.  (Get it?  David Carradine and Kung Fu)  You teach, and I shall follow.

My prayers for all of you,
Sophie

Re: Would like 2 send letter like this 2 Oprah but don't want to misinform

I just read these posts about writing a letter - think it is a wonderful idea - would love to submit. Sophie - I love your letter, but - I agree with Kris - I was told at the Mayo that CC is 2nd - only pancreatic is worse - that is bad enough, however!

Joyce

Re: Would like 2 send letter like this 2 Oprah but don't want to misinform

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.

30-something caregiver

Re: Would like 2 send letter like this 2 Oprah but don't want to misinform

http://www.cancer2000.net/introduction/cancer_distribution1.jpg

30-something caregiver

Re: Would like 2 send letter like this 2 Oprah but don't want to misinform

The above graph represents the survival percentages, and is taken from the NCI SEER website: 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.

30-something caregiver

Re: Would like 2 send letter like this 2 Oprah but don't want to misinform

Okay, thanks guys, I will be sure to clarify in my letter about cc as far as its ranking.

My prayers for all of you,
Sophie

Re: 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?