September 17, 2010 at 12:54 am #41295debrahParticipant
done…a little late but done all the sameSeptember 16, 2010 at 9:01 pm #41294devoncatParticipant
Welcome Sunshinecaregiver….is your name a reflection of a sunny personality or where you live?
You might want to post on the introductions part so we can all get to know you. Or if you are shy, please just hang around and get all the information you need. We try to be a helpful bunch with information, but the support you will get here is equally important.
KrisSeptember 16, 2010 at 8:57 pm #41293sunshinecaregiverMember
I have been searching for information and help with my Mother’s diagnosis of cholangiocarcinoma. When I found this site I was so elated, I have learned more here than from the Doctors or hospitals. Thank you to all of the patients and caregivers for the information and hints. Everyone has been so helpful.September 16, 2010 at 7:13 pm #41292ronidinkesMember
i also contacted them.
roniSeptember 15, 2010 at 11:51 am #41291lalupesParticipant
Yay!! Great news!!September 8, 2010 at 2:46 am #41290lainyParticipant
YEEEEEEEEAAAAAAAAAHHHHHHH! Now words can express how I feel right now!September 8, 2010 at 2:02 am #41289dldctMember
Congratulations to everyone – you’ve done a great job AND you’ve been heard!
We (the foundation) have been contacted by Stand Up To Cancer. They have asked us for our logo and a bit of other information. We have gotten them the required elements so the foundation name/logo should show up shortly.
Thank you all for your support. We couldn’t do it without you.
DawnSeptember 8, 2010 at 1:38 am #41288darlaParticipant
Ditto for me. I also received that email. It appears we are being heard and soon we will be included as a resources on their site. DarlaSeptember 7, 2010 at 11:13 pm #41287dmeekParticipant
I received a similar email as Kim mentioned. Seemed to be a “form email”, but at least we are getting responses. Hopefully they will include our foundation on their web-site soon!
DaleSeptember 7, 2010 at 8:09 pm #41286kimmieParticipant
I sent my request the day you posted this. Today I received an email from them that said in part,
“Thank you very much for your email. We are grateful for the feedback that we have received from you as well as the many others who have contacted us from the Cholangiocarcinoma Foundation community.
“We have contacted the Cholangiocarcinoma Foundation directly with
information about becoming part of the Resources section of our site,
and we hope to hear back from them shortly.”September 7, 2010 at 4:32 pm #41285linda-zParticipant
Way to go Kris! Be as “stinky” as you like. We like you that way. It is hard not to let your emotions carry you away. I found I am falling into that rut too. Feels good to get it out though.
Keep on keeping on.
LindaSeptember 6, 2010 at 9:21 pm #41284lainyParticipant
Nothing wrong with you, “Stinky”. I love it when you get like that, someone needs too. Now you know how I felt when Oprah iognored our letters not once but twice. Hans broke through with the new law and you can perhaps break through by being cantankerous, we love you any way you are!September 6, 2010 at 7:00 pm #41283marionsModerator
Nothing is wrong with you, Kris. Only, you are letting your emotions getting the best of you. That is something I fight myself, often. When attending these various medical conferences and speaking with advocates of other rare diseases it becomes quite apparent that not only our disease, but also the many other rare and fatal diseases are not addressed adequately. Research focused on cancers affecting the majority of patients always will be funded first. We are to hope that this research will trickle down to us too. Cancer Foundations of the major cancers accumulate enormous amounts of monies from private donations. Research hospitals are able to fund their scientists through by government grants or, if so fortunate, from private institutions. Developing a drug costs millions of dollars and pharmaceutical companies continue to focus on those diseases with the highest return rate on their investment. But, we will not go away. This foundation will continue to reach for the stars in that our efforts of finding a cure for this disease will not be overlooked. If only we had the financial power to make the impact needed in order to receive funding from the NIH and private donations to stimulate pharmaceutical companies to develop drugs leading to a cure of this cancer. Presently, tissue samples from other cancers are being collected and stored for research funded by the NIH. We want the same for us. Believe me; I understand your frustrations as I am confronted with it on a permanent basis. I had to learn to control my anger and I had to control my emotions often in order to continue to take the baby steps required to achieve results favorable for us. Therefore, go ahead. Throw a fit. I am behind you.
MarionSeptember 6, 2010 at 5:29 pm #41282devoncatParticipant
Could you keep them coming?
I just got through writing a somewhat sharp email to them stating that we have all sent requests and are continueing to be ignored. I was so frustrated that I accused them of being a typical cancer organisation that focused on the big cancers and ignored rare cancers.
I just got an email back stating that I would have a response in the next day. Finally getting somewhere I think.
Why is it that polite, friendly requests were ignored and I felt that I had to get stinky? I hate having temper tantrums and I feel like I just had one with a good organisation. I dont know what is wrong with me recently.
KrisSeptember 3, 2010 at 7:08 pm #41281linda-zParticipant
Wonderful idea. It took a bit more effort (website wouldn’t access), but I found a way. Done.
Thanks for bringing it here!
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