• From: San Francisco Bay Area
  • Registered: Mon, 07 Jun 2010
  • Posts: 63

Topic: Perhaps a way to help us "Stand up and be Noticed".

Last Saturday night @ about 11:30 pm ( pacific time), I logged on to this site.
And what do you think I noticed ?  There were 65 non-members also on this site.
I couldn't believe that there were 65 !   So, 10 minutes later I rechecked the number--and there was then 72 non-members reading posts !   72 people !!!  I couldn't believe it !

It seems to me that if the Cholangiocarcinoma Foundation Website representing such a rare and "orphaned" cancer as ours had 2 or 3 thousand members, then perhaps we wouldn't be considered so obscure and perhaps researchers and the medical field would take notice of us.

So..............I'm wondering what can we do to get these people to join/register as members ?
Have a notice/banner open up when people come to the site --asking them to sign up--explaining that the more members we have, the more noticed we will be ?

What do you think ?

Snezzie

Snezzie's Website

2 Reply by marions (edited by marions Thu, 02 Dec 2010 00:00:05)

  • Registered: Fri, 12 May 2006
  • Posts: 8,312

Re: Perhaps a way to help us "Stand up and be Noticed".

Some of the greatest ideas come from the members on our site.  Thank you.  It will be interesting to read the suggestions of others,
Often time

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
  • Registered: Sun, 01 Aug 2010
  • Posts: 493

Re: Perhaps a way to help us "Stand up and be Noticed".

Is there a way to send an invitation to the email that looked at our site? I think a banner would be great. Please join so we can get the word out.

  • Registered: Thu, 16 Sep 2010
  • Posts: 77

Re: Perhaps a way to help us "Stand up and be Noticed".

My two cents on the subject---since some have tried to contact Oprah and have not had any success in getting the cc recognized on her program.  Has anyone thought about the Dr. Oz Show?  It might be worthwhile to contact him.

Maybe everyone is intimidated by the "knowledge" that the whole world will know we are ill.  Even with the incognito names you really feel exposed.  You get poked and proded by the Dr and nurses and wear a silly chilly gown in the hospital and after all of that sometimes you just don't want to discuss your problems with anyone else.

  • Lainy
  • Lainy
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  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,315

Re: Perhaps a way to help us "Stand up and be Noticed".

Hi Sunshine! I tried the Doctors as well but someone could try Dr. OZ. I got it! They don't want us as they don't want the world to know that they know nothing about us!

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.
  • Registered: Sun, 01 Aug 2010
  • Posts: 493

Re: Perhaps a way to help us "Stand up and be Noticed".

Good one, Lainy. If they know about us, they might have to do something. I bet if their loved one gets this cancer, they'll talk about it. Hopefully someone will contact Dr. Oz.

7 Reply by Snezzie (edited by Snezzie Fri, 03 Dec 2010 21:45:06)

  • From: San Francisco Bay Area
  • Registered: Mon, 07 Jun 2010
  • Posts: 63

Re: Perhaps a way to help us "Stand up and be Noticed".

HEY-----Look at how many people have signed up and become members since this thread was posted !!!!!
If we really made a great effort-- can you imagine just how many members we could have???

Dear Sunshinecaregiver---I understand completely and absolutely what you wrote.  I, myself felt that way for a very long time, and I still do--to be honest---but I have decided that I am willing to risk my privacy, my comfort-zone, willing to forfeit all of it in order to somehow, some way do something to make a difference for all of us who are touched by CC. I don't mind be poked and prodded if it could make researchers/scientists/doctors/drug companies want to try to help us/me.

I have tried Oprah, but never, never received a reply.  I'll try Dr Oz, but I think that they don't want to touch anything like this unless it's "positive"--they don't want the viewers to be upset by the show's content---at least that's what some people have told me when I bring the subject up.........
So that comfirms it to me that it is up to us/me to be our own advocates.

Snezzie

Snezzie's Website

  • Registered: Thu, 16 Sep 2010
  • Posts: 77

Re: Perhaps a way to help us "Stand up and be Noticed".

Snezzie, I did go to Dr Oz's site and did a question on putting this subject (cc) on a future show.  I got an auto-reply so hopefully if we get enough people to post, they just might do a show on this.  We have survivors, what can be more positive than that.  We just want better, faster treatment and lots of survivors.

  • From: San Francisco Bay Area
  • Registered: Mon, 07 Jun 2010
  • Posts: 63

Re: Perhaps a way to help us "Stand up and be Noticed".

Excellent Sunshine !! ----If everyone who reads this thread/posting actually contacts the Dr Oz show and request this subject on a future show ---there's no telling what can stem from it.
This might be the beginning of something !!!!!!!!!!!
And I think that you are right----"we just want better, faster treatment and lots of survivors".
I think that should be our main premise when we contact the Dr Oz show !!!!!
We could tell them that February is our Awareness Month.
I will email Ellen Degeneres' site as well.

Snezzie's Website

  • From: San Francisco Bay Area
  • Registered: Mon, 07 Jun 2010
  • Posts: 63

Re: Perhaps a way to help us "Stand up and be Noticed".

Well---today is 12/15---and on 12/4 I emailed the Dr. Oz site and Ellen Degeneres' site and a few weeks prior to that , Oprah's site.
No reply from any as of yet.
I'm so very naive--I imagined that they'd all reply saying "We'd love to help you and let everyone know of CC Awareness Month"" !!!!!!
""We Just Want Better, Faster Treatment and Lots of Survivors "".
This CC Foundation has a 'Young Reseacher" Grant of $50,000.
CANLIV has a similar Grant for $30,000 according to their site.
I think we need more than 1 or 2 grants........
Since I joined this group of amazing people--about 350 people have also joined.
So I'm hoping some of those people will read this and send me some ideas of what
we can  do for the  CC February Awareness Month to ""Stand Up and be Noticed" by the world, the researchers, our communities and the media.
I just feel that while I still feel okay, while I am able, I want to do SOMETHING to help us get "better, faster treatment and lots of suvivors" as Sunshinecaregiver wrote in her post..

Snezzie's Website

  • Lainy
  • Lainy
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  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,315

Re: Perhaps a way to help us "Stand up and be Noticed".

Good luck, Snezzie, exactly the same response I got 3 years ago from the same people! I did have a thought then, not sure how to execute it. At a given time, all over the world we all stand up and be noticed for CC.

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.
  • Registered: Wed, 28 Jan 2009
  • Posts: 143

Re: Perhaps a way to help us "Stand up and be Noticed".

good luck, we have e-mailed all of the celebs. talk show hosts almost a year ago and have never recieved as much as a  hello back.....even tried some of the medical doctors on the nightly news channels, no reply...maybe if every member sends them an e-mail, around the same time and day they might take notice.....so lets bombard them with e-mails........ron and lucille

  • Lainy
  • Lainy
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  • Offline
  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,315

Re: Perhaps a way to help us "Stand up and be Noticed".

Hi Ron!  Stellar idea!  It worked for stand up for cancer, why not for this!!!!!!!!!!!!!  Let's pick one and concentrate on that show. Although I remind that I sent "35" letters and that didn't work. Don't know how anyone could have read even one of those and not cared. How about doctor Phil and tie the disease in to February & Valentine's Day about loving couples who are now caretakers and patients and tell the story of bravery and love in the face of this CC for Although I am sure they have that program already filmed!

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.
  • Registered: Sun, 01 Aug 2010
  • Posts: 493

Re: Perhaps a way to help us "Stand up and be Noticed".

What a wonderful suggestion. Count me in.