NEW OPRAH UPDATE
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I did get your letter and it was not too long. Could never be long enough!
I did answer you on it perhaps you did not get it. We now have 25 letters! Great! Hopefully it will accomplish something. Anything. All you can do is be there for your brother and that will help ease him down the road of this horrible journey. I have said, Teddy and I are fortunately not at this point but perhaps by doing this letter bit it is helping prepare me to cope with what lies ahead. One can only imagine. All I really know is this web site is filled with very heroic, loving and giving people. Too bad you all don’t run this world!!! Our prayers and thoughts go out to you and your family.Hi Lainy: I just sent you a letter to Ophra. It might be a little long, but I
can’t stop talking about this devasting disease that ruins so many lives. It is a rare cancer that needs to be addressed by the American Cancer Society. My 66 yr old brother just started Hospice today and I can’t stop crying.I agree we need to raise awareness. Raised awareness = raised money. Raised money = more research.
Look what happened when the campaign to raise breast cancer awareness started. Breast cancer is now practically cured when caught in the early stages.
I emailed a letter to you Lainy. Thank you for sending the letters to Oprah. I have been looking for ways to vent my grief in positive ways and you have given my one way to do that. I appreciate that. The world should know what this disease does and just because it is rare as cancers go it is no less devastating to those of us who face it. Thank you again. Cathy
Heather, sorry I was just checking and somehow didn’t see your post earlier. I am so very sorry to hear about your husband. What is going on up the Road on 17? Of course you can write all the letters you want. I think you will feel better and more letters will certainly help our cause. I had a real meltdown yesterday.
More because doctors do not communicate. Its OK now. What happened in your neck of the woods? If you wanted to meet one day in between our 2 houses that would be fine with me. We could sit and tie one on with ice tea.Hey Lainy…me again up I-17…fall has spread its wings…a great treat from the heat! My question to you is this…can we write more than one letter…what I mean is…I sit and watch this disease kill my husband…bed ridden now for 10 days….the emotions this week have taken their toll….maybe just to allow them to see the devestation it causes….and, our very best friends who have been battling this with us would like to write too…is this possible?
Thanks,
HeatherGale, Everyone has been submitting through the website. Just click on Lainey’s e-mail. You can address it to Whom it May Concern, as the Cholangio Org is going to provide a cover lettter for all the letters.
Best wishes, Thank You!
Jeff G.I’ll be happy to write a letter. How would you like it delivered? Email, through this website, mail? Who do I addres it to? CC is a devastating diagnosis. No one should be sick with a name you can’t even pronounce! There is not much out there and no one to share with, as you know. Let me know.
We decided that we needed to bring CC and this site to the front line as we really need to try and get our plight noticed so that perhaps some research can start on this monster disease. I had the idea to send as many letters as I could get to the Oprah Show and maybe, just maybe someone will listen. I asked Caretakers and Patients for letters and so far we have about 25. I will be sending them next week and will send them registered mail. I am keeping copies so we can try other places if that does not work. I have been asking for 1 page letters to be e mailed to me. Your letter would be greatly appreciated and would certainly help the cause!
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