Topic: Cholangiocarcinoma Awareness Month

We have  a new poll up!

cholangiocarcinoma.org :: poll

Vote and discuss here!  Thanks!

2 (edited by Lalupes Wed, 14 Oct 2009 03:31:46)

Re: Cholangiocarcinoma Awareness Month

That's great, Rick!!  I see you've linked it to Facebook, too - I'll poll my mates as well.

Thanks
Julia

p.s. I've linked the poll to my Blog.  I hope no one objects.  (I'm not sure why anyone would but my sis & I suddenly got the jitters about treading on anyone's toes.)  If anyone wants me to remove the link - please say!!

"Time may be a great healer, but it's a lousy beautician."

Re: Cholangiocarcinoma Awareness Month

Thanks for posting this, Rick!!  I voted for February because:

* February is the most unique month in the year, and CC is a unique cancer
* There are only 4 other Awareness days listed in February
* It works well with the heavy medical conference schedule in the spring.
* It works well with the fundraising initiative that the Foundation is about to launch to support research grants, and co-host a bile duct cancer-specific medical conference.

30-something caregiver

Re: Cholangiocarcinoma Awareness Month

I voted for January...the month this disease took my sister from me.

Re: Cholangiocarcinoma Awareness Month

Sara,
I wish I would have read before voting. Feb does sound good!
But is it too soon to get something going for 2010?

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Cholangiocarcinoma Awareness Month

Kris - probably.  I think we're resolved that 2010 will be our year for experimenting with concept, with hopes that we'll look polished by 2011. 

Ideally, I would like to map out something to do every day of the awareness month.  Something amazing that the Colorectal Cancer Coalition does during their month is an advocacy day on Capitol Hill.  We're not ready to do that in 2010, but I think that would be a very important date for future awareness months.  It doesn't involve the international community as much, but we could organize similar "marches" in some of the global markets as well.

30-something caregiver

Re: Cholangiocarcinoma Awareness Month

A woman can change her mind, is that not what we are known for?  I vote for February 2011.

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: Cholangiocarcinoma Awareness Month

While the poll is drawing to a close, I thought I'd start asking for ideas for the Awareness month.  I thought it would be nice if we did something every day of the month.  Maybe a mix between press releases, events, interviews, etc. 

Any clever ideas?

30-something caregiver

Re: Cholangiocarcinoma Awareness Month

I still have those 35 letters from a year ago that I tried to send out to talk shows. Perhaps we could add some new ones and do something with those. Just not sure what!!!

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: Cholangiocarcinoma Awareness Month

Perhaps new members to the site could do a letter and maybe those who have done a letter could do an update on what has happened, how life has been etc over the last year?

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: Cholangiocarcinoma Awareness Month

Great idea Gavin! Then we have to see what they would want to do with all the letters.

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: Cholangiocarcinoma Awareness Month

Can someone have a pulled pork bbq fundraiser and send me a plate?

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Cholangiocarcinoma Awareness Month

Gladly, but what is "pulled pork?"
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: Cholangiocarcinoma Awareness Month

I think it is  a sandwich piled high with tender shredded pork soak in BBQ Sauce.  I'll have some too!  smile

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Cholangiocarcinoma Awareness Month

Rick has added a fun graphic for February.

30-something caregiver

Re: Cholangiocarcinoma Awareness Month

Sara,

I noticed that.  Looks great!  So, is February going to be the "official" month?

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Cholangiocarcinoma Awareness Month

Hi Sara,

I noticed that yesterday and it looks good indeed! My thanks to you, Rick and everyone else for all that you do.

Best wishes,

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: Cholangiocarcinoma Awareness Month

I invite everyone (and especially Kris) to North Carolina for BBQ.  Lexington, NC is the barbeque capital of the world...lol

Pam

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: Cholangiocarcinoma Awareness Month

Pam...I would love that.  What a nice thought.  I don't think that I can make it for the BBQ however, some day there will be a conference for me to attend in your area.  I can't wait.
Best,
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: Cholangiocarcinoma Awareness Month

I like the idea of February as CC awareness month. 
Last week when I brought mom in to see the onc at our local cancer center, they remembered my dad was a patient there.  They thought pancreatic cancer, but I reminded them it was cholangiocarcinoma.  They replied, "that's right.  should've remembered, we don't get many of that cancer."  I told them about this foundation, and left a few brochures with them.  I hope that if/when they check in, they notice we have an awareness month, and read all the amazing stories left here.

It only takes a spark to get a fire going...

Jolene

"Faith in something greater than ourselves enables us to do what we have said we'll do, to press forward when we are tired or hurt or afraid, to keep going when the challenge seems overwhelming and the course is entirely uncertain."     ~g. b. hinckley

Re: Cholangiocarcinoma Awareness Month

Thank you, Jolene for bringing awareness to your local cancer center.  Your kindness of leaving the brochures will help someone else touched by this disease.  How is your Mom doing?
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: Cholangiocarcinoma Awareness Month

I like February, and - I had a pulled pork sandwich for dinner last night! Delicious.

Lainy - I've forgotten - did we ever send those letters on to Ellen, after you tried Oprah??

Joyce

Re: Cholangiocarcinoma Awareness Month

Hi there Joyce. The letters went to Oprah twice, Ellen DeGeneres, CNN, Geraldo, Riley and Beck. Oh, also the Walter Payton Foundation and Helen Hunt. I also had an idea of getting in to the World Book of Records by having a day where volunteers all around our CC Globe would shave their heads on a certain day in support of CC. I know, I can get carried away. Or a "Remembrance Day" around the world picking a month to use as an awareness month. Remember I was people what month they liked. Just trying to get the ball rolling but I know sometimes these things can be daunting especially if one is not feeling well. Then my own problems started in as well and I let my brain rest on that part of it.

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: Cholangiocarcinoma Awareness Month

Cherbourg wrote:

I invite everyone (and especially Kris) to North Carolina for BBQ.  Lexington, NC is the barbeque capital of the world...lol

Pam

Those are fightin' words, Pam!  smile  Actually, I love the pulled pork in North Carolina.  If you are ever in Texas, please let me know.  I'd love to have you over for some smoked brisket!

30-something caregiver

Re: Cholangiocarcinoma Awareness Month

Lainy wrote:

Hi there Joyce. The letters went to Oprah twice, Ellen DeGeneres, CNN, Geraldo, Riley and Beck. Oh, also the Walter Payton Foundation and Helen Hunt. I also had an idea of getting in to the World Book of Records by having a day where volunteers all around our CC Globe would shave their heads on a certain day in support of CC. I know, I can get carried away. Or a "Remembrance Day" around the world picking a month to use as an awareness month. Remember I was people what month they liked. Just trying to get the ball rolling but I know sometimes these things can be daunting especially if one is not feeling well. Then my own problems started in as well and I let my brain rest on that part of it.

LOL, Lainy!  Shaving our heads?  Hmmm...Maybe I would do it and send it Kris' direction.  Although, I doubt she'd want my hair.  It's rather damaged right now.

If anyone has any suggestions on what to do this month, please let us know.  We're doing a soft launch this year just based on the timing aspect.  However, we can make some things happen fairly quickly, so please let us know if you have any thoughts on what we could do to help raise awareness.

30-something caregiver