• Sara
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  • From: Houston, Texas, USA
  • Registered: Thu, 12 Jan 2006
  • Posts: 285

Topic: Reformatting the Message Boards

I'm going to throw out a suggested format for the upgraded message boards, which is really just a re-arrangement of the current format.  I hope the rest of the community with provide comments and suggestions.  Remember: this is your sounding board, so we want to make it as user-friendly as possible!  Here are my suggestions:

Biliary Cancer Forum
  - Introductions
  - General Discussion
  - Family Blogs
  - Treatment Experiences
  - Research
  - Pain Management
  - Clinical Trials
  - Nutrition
  - Alternative Treatments

Caregivers Forum
  - Grief Management
  - Supportive, Palliative and Hospice Care
  - In Rememberance

The Cholangiocarcinoma Foundation
  - What's New
  - Events
  - Foundation Discussion
  - Suggestions

Now, the message boards will only be one component of the new website.  There will be much information that is easily navigated outside of the message boards.  You'll find the new website will contain similar information that you would find on any of the cancer non-profit sites.  The message boards will mainly be a means for everyone to keep connecting and quickly sharing information.

30-something caregiver
  • pmfpa
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  • Registered: Sun, 28 Jan 2007
  • Posts: 14

Re: Reformatting the Message Boards

Hi,  Perhaps this is just going to seem silly, but I thought I would share a comment.  When I was first looking for information after my husband was diagnosed a year ago, I mentioned this site to an online friend going through the same horror.

Her initial response was that the site was "dark" meaning the gray background.  It just about set her over the edge, was  the words she used.  Color may sound like an unimportant thing, but I must admit, I read often and post rarely, but I always remember the dark feel she mentioned.

I know my mood is better when the sun is out, the CA-19-9 is down, and we're between chemo.  There are so many dark times with this disease, could we consider something less gray.

Pam

  • Registered: Sat, 09 Dec 2006
  • Posts: 514

Re: Reformatting the Message Boards

I have one suggestion, but I don't know if it can be done: when someone posts in the introductions and then the thread gets really long, would there be a way for me to move my response to another thread, in Experiences, maybe, and it would still show up in Introductions? It's a long shot, but when a conversation is going on, you just continue it and you don't tend to post a reply in another thread, so I thought it would be worth a shot to see if we could move posts ourselves. - Joyce

  • rick
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  • From: Stansbury Park, Utah
  • Registered: Fri, 06 Jan 2006
  • Posts: 162

Re: Reformatting the Message Boards

Sara:  Thanks, I had no idea where to even start. 

pmfpa:  Not silly at all, and the new message board/website will not be dark!

jmoneypenny: We're limited as to what this message board can actually do.  We need to think of a way to split up the "experiences" forum.  It's a bit too broad and it gets bogged down pretty quickly.  (Just like the intros)  Any suggestions?

rick's Website

  • Sara
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  • From: Houston, Texas, USA
  • Registered: Thu, 12 Jan 2006
  • Posts: 285

Re: Reformatting the Message Boards

Rick - I have some thoughts regarding keeping the "experiences" thread more on-topic.  I know we discussed this about the clinical trials section, but I'm not sure if you were there when we had this discussion.  Here are the thoughts:

For the clinical trials thread, we would have multiple "sticky" posts that are permanently positioned at the top of the thread.  Each post would be entiled the name of the particular clinical trial.  The thread would be open to posts, and the hope is that members who have enrolled in a particular clinical trial will comment on their experiences.  Now, we could keep the Clinical Trials thread open, such that people can still post new topics.  However those new topics would fall in line behind all the sticky clinical trials. 

I think if we take this concept, and apply it to the Treatment Experiences thread, we could have some success at keeping the conversations more organized.  (because new users will open up the Treatment Experiences thead and see the sticky discussions listing out the various chemo regimes, which would be helpful to the new user to easily find the most pertinent information, and perhaps the new user will remember to post their own treatment experiences in the appropriate thread.)

30-something caregiver
  • Peter
  • Peter
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  • From: Vermont
  • Registered: Thu, 02 Feb 2006
  • Posts: 235

Re: Reformatting the Message Boards

Sara and Rick,
A couple of quick thoughts.

- The FAQ idea linked off the front page to give new visitors a starting point.
- Link to the current issue of the newletter (when one is ready) from the front  page.
- Link to a list of medical centers/surgeons with experience with Cholangio?  This would require constant updates and could not be exptected to include al possibilities, especially world wide.    I'm cautious of the difficulties of this one but also feel it could be a valuable resource.

-Peter

  • Sara
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  • From: Houston, Texas, USA
  • Registered: Thu, 12 Jan 2006
  • Posts: 285

Re: Reformatting the Message Boards

Peter - you could have been sitting in the meeting last month and/or reading our minds!  We're going to touch upon all of those on the new website.

30-something caregiver
  • From: Kalmar, Sweden
  • Registered: Sun, 20 May 2007
  • Posts: 1,951

Re: Reformatting the Message Boards

I would also suggest looking www.firstgiving.com. I would like to see something like that. Individuals and teams can create fundraising pages for charity walks and runs, etc. People can then donate over the internet for that specific event.  I was looking at doing a mini triatholon this summer (but got married instead!). I was looking at using this site to raise money. The problem is that Firstgiving keeps some of the money raised. It would be wonderful if this site could have its own such pages so that all the money raised would go to cholangiocarcinoma foundation.

Cancer is a word, not a sentence.

36 year old patient with buckets of hope
  • Peter
  • Peter
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  • From: Vermont
  • Registered: Thu, 02 Feb 2006
  • Posts: 235

Re: Reformatting the Message Boards

Sara,
I have to admit I cheated a bit.  I'd had an earlier correspondence with Stacie about some ideas.  Particularly the FAQ suggestion which I think is a great idea.

-Peter

  • Sara
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  • From: Houston, Texas, USA
  • Registered: Thu, 12 Jan 2006
  • Posts: 285

Re: Reformatting the Message Boards

devoncat - we are looking into First Giving.  They have a small fee for us to sign up as a participating organization, and they also keep a % of the funds donated.  It's a higher amount than Paypal keeps, but it's still relatively low.  (I think it's 7 or 8%, and when you figure that Visa/MC has their own cut, it doesn't seem as unreasonable)  Ideally we'd like to offer this service on our own, but I don't think we're there just yet.  Soon...

Peter - heh!  We certainly couldn't do the FAQ without your help!  The website is really developing into something special.  I cannot wait to get to the point of publication!

30-something caregiver