Topic: We need some of your suggestions

What can we do to continue raising awareness all year long? 
You, the members on this site. come up with some awesome ideas.  All are welcome
Thanks a bunch,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: We need some of your suggestions

Marion, I must say that after I sent out the 30 E Cards I have been getting so many responses on how beautiful they are. I am going to start using them now for everyone for all occassions. I feel if I blast people enough with CC Cards they will soon remember the name cholangiocarcinoma. And as you might guess, with our endeavor here to make changes for the better in Hospice, our CC name is going to be popping up a lot. A side benefit!

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: We need some of your suggestions

Does the Cholangiocarcinoma Foundation have a facebook +/or twitter account so we can tag on so our friends can see it and we can tweet about it?

Cathy
"Life is 10% of what happens to us and 90% of how we respond to it"

Re: We need some of your suggestions

cathy_a wrote:

Does the Cholangiocarcinoma Foundation have a facebook +/or twitter account so we can tag on so our friends can see it and we can tweet about it?

http://www.facebook.com/cholangiocarcinoma

http://twitter.com/curecc

(there are also icons at the bottom of the screen that will take you right there.  come join us.)

Re: We need some of your suggestions

The Cholangiocarcinoma month is in full force and has been received with fantastic responses by many of you. Thank you.  Please, help us to continue to fatten up the piggy.  (Top of page.)  All monies received will be directed to research of this disease.   
We really need some help.  What can you think of would help bring awareness to our cancer?  Any idea is welcome.  With these many great minds on this site there is no doubt that we will be successful.
Thanks a bunch,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: We need some of your suggestions

How about in say 6 months time or so we could have something like "catch up week"? That way we could have another blast of awareness for a week and at the same time we would be able to promote what we have done and what has been achived since the end of awareness month? Plus if we did something like that then it would be halfway between the end of 1 awareness month and the start of the next one for 2012. I know it won't help for continued raising of awareness throughout the whole year, but it was just a thought I had.

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: We need some of your suggestions

Cool idea, Gavin.

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: We need some of your suggestions

I personally have never heard of cholangiocarcinoma before I woke up one morning and I glowed in the dark and looked up what caused jaundice. While I love the great idea for the "you tube" promotion, the people with this disease is the story. There are plenty of free (always looking to save a buck) press release programs that we can issue a success story.

There are many "cancer" sites that list the cancers but I never see cholangiocarcinoma listed. Have we approached them to give this site some credit and even a link is great for seo love. 

Cathy

Cathy
"Life is 10% of what happens to us and 90% of how we respond to it"

Re: We need some of your suggestions

Cathy....great thought. Rick, Dawn, Stacy, and Sara continuously take a look at the responses to the posting.  They will be happy to see your's also.
It really is great for you to ask the question re: other organizations linked to us and the reverse.  Indeed, there are. 
You need to go to top bar, get involved, and scroll down to: Resources and Partners.  We always are open to partnering with others.  If you have any suggestions please, let us know.  We appreciate the input. 
Take care and best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: We need some of your suggestions

This week I am meeting my team of doctors for my plan of attack (hoping for liver transplant) and when I know what the plan is, I will be happy to volunteer to do more than just "read" and give my ideas. My life has changed with this disease, (like everyone else) and I know this is where I am suppose to be... :-)

Cathy

Cathy
"Life is 10% of what happens to us and 90% of how we respond to it"

Re: We need some of your suggestions

Cathy, understandable. Please let us know what the doctors come up with and wishing you the BEST!

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.