YOUR PERMISSION IS NEEDED
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Hey Lainy, you certainly have my permission. I think Oprah is the better of the two because she carries a larger viewer base than anybody, and she sure does carry alot of influence. Thanks for the encouragement on chemo. I actually felt strong enough today to drive over to Trader Joe’s.
I’d like to meet you Lainy. I visualize you in a hula skirt dancing.
So far including mine, I have 4 letters. I plan to send them even if nobody else sends more.
Prayers and prayers and more prayers for all of you,
Sophie
I think it helps to have someone famous. Walter Payton died of cc and his family set up a foundation, see:
His wife and children seem very dedicated to this cause, here in Illinois I saw TV spots of his kids advocating for organ donation. Maybe we can work with them on something, I just saw they are having a fundraiser this Saturday and might try to make it:
Patty
Well guys, so far I have had only the one negative comment but will email
Stacie and ask her about it. I was never going to include names on the ones that are from the “past”. Just a first name. It was an idea to send a bunch or notes to show this is “dead” serious!
I will let you know what the board says. I was too lazy today to write her, one of a caretakers “down” days. I am just lying around watching stupid movies!You have my permission to use my information. And thanks for your great efforts.
Raising awareness is a crucial element to finding a cure. That’s what the whole advocacy/awareness/political campaign about breast cancer is all about. Twenty years ago people got busy about breast cancer awareness, and lo and behold, research dollars started pouring in.
Of course, the fact that breast cancer is one of the most common cancers really helps the awareness factor… that is why it is so important to raise awareness of rare and deadly cancers like cholangiocarcinoma. We tend to get ignorned.
Wabals, I’m sorry to say any information provided or put on the internet is strictly volunteered information. There is no way what so ever to keep things confidential on the internet, we all know that. The only caution is that we do not violate any trust of members or laws. The Idea of raising awareness for this type of cancer is a humane and nobale thing to do and the only way is by public awareness and support for research. How do you think the cure for polio came about? Public awareness has save countless number of children’s lives. I’m no way attacking this idea, just want to make sure we do it legally. If it is not legal to do, I’m sure it won’t be done. Lastly, there are over 200 different types of cancer. Cholangiocarcinoma is just one sitting on the bottom of the recognition list for research; and with out research no cure. I respect your opinion, as I hope you will mine. I sense we are on the same page ,just want it done right and legal.
God Bless All!
Jeff G.I do believe this is all confidential information, or it should be. I have had second thoughts about this project as it relates to Oprah. I do not think it is as appropriate to enlist her help as it would be someone like Katy Couric, who has pancreatic and colon cancer foundations which already exist. In any case, written permission should be obtained from anyone who’s whole or partial name, email ID, or initials are used.
Hi Lainy… I admire your robust efforts and support you all the way. I don’t think there is a problem using the Introduction post in support of our efforts for the Oprah awareness project. However, I would run this by Stacie and our legal advisory gurus first. The only thing causing me to be hesitant is two Federal Laws, the National Privacy Act of 1974 and the Health Information Portabilityand Accountability Act of 1996. (HIPAA) I would say all the information posted on this site is concerning someones health and I would not want you to have to get in any trouble. If the information we use, can in any way shape or form can be connected to, or trace back to the patient, there could be a problem. I don’t have a problem with mine but others may, for some reason we are unaware of. Just withholding the last name may not be enough. This HIPAA Act is pretty strengent and dealing with it for many years, a consent of release form was always required. Even the consent form had to be very specific, who,where,why and have an expiration date as well. You know how awkward government programs and laws are. I would want you to play it safe and sure. I’ve been a memeber for so long ,I can’t remember if there is a legal user agreement rules and condition dislosure for this site and use of information with in. Don’t let this stop progess though ,you guys are doing a great job collecting this information. Who knows it might not apply in our case?
Bless Ya and Teddy!
Jeff G.You have mine for sure. But it may be better if you contacted those who you want to quote directly as we can only speak for ourselves.
WAY TO GO LAINY AND SOPHIE!!!!!!!!! You guys are working your tookies off for us and I really do appreciate it. Now we all as a group have to get off our tookies and respond so this can go through and all your hard work will mean something. Thanks again.
Kris
Today is September 7th and we only have 1 more week to get those letters to me and to Sophie, to send to Oprah. I have come up with an idea that I hope will not offend anyone. I am starting to copy posts to our CC site, especially first time notes as I feel they really show the emotion of CC. No one will know who wrote them as I am only using first names. If this is OK with everyone I will go into archives for past notes and use some of those as well. BUT we STILL need your letters if we are going to do this project. Remember 1 page only and Caretakers go to me and Patients go to Sophie. Sophie is going through chemo right now and still doing this with me so lets show her we support her by getting the letters in!!! You go Sophie!!! I miss you!
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