Cholangiocarcinoma Awareness in Canada
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Dianne..
how about a drop-down for Canadian residents?
Rick, our web designer “can do anything.” He is THAT GOOD.
Map of the world – great idea, possibly to come as we extend to other Nations.
You are mentioning that only one GI specialist knew of a surgeon at Princess Margaret. This should be enough incentive to list specialists. Patients could bring awareness to the GP.
Listings of centers: why would it be redundant to have those on the site?
Have to inquire about Professor Charles Blanke.
Re: questionnaire. I think that you can put out any question on this board.
Naturally, all of this needs to be brought to the attention of the board of the Cholangiocarcinoma Foundation. I will take care of this.
There are many legal issues to consider when expanding into other countries. This needs to be investigated.
Keep thinking, Dianne. We can do this.
What does everyone else think?
Best,
MarionDianne,
Marion and I will be talking by phone tonight. Skype sounds good, but we’ll need to get those on board who’d like to use the service.
We’ll talk about my experience with Cdn Cancer Society. It was frustration at the local level, not nationally that I had problems.
I look forward to your e-mail.
Raye
I think it’s a good idea to keep this thread going too, as it may inspire others to start an initiative where they live and be a useful reference.
Here are a few of my thoughts on some of the things that Marion and Raye have said:CC Foundation: Canadian Content
– yes a Canadian page within the CC Foundation would be great. Marion, could you tell us what you have started already?
– my suggestions would be to add: a) on the main page of CCF an “International” title to the menu, and b) the following page (depending on how web savvy your web designer is), maybe a click-able map of the world would be helpful.
How do I envision a Canadian Branch?
– it would depend…I think for the time being, a presence on the CCF foundation site is a good start… down the road there could be a Canadian site… I guess this would be where Raye would come in with his web site experience, which then raises more questions.
– a listing of physicians?… when my Dad was first diagnosed at Oshawa General, only one of the GI Dr’s. knew of the surgeon specialist at Princess Margaret Hospital in Toronto. In Canada, we can’t just go and find our own Dr’s here, we have to be referred by one, usually your GP.
– a listing of Centres? Everyone pretty much knows where they are, you either live near one or are sent to one. Again you have to be referred, and they all have web sites.
– I see from the “Medical Advisory Council” page that there is one Canadian, Professor Charles Blanke British Columbia Cancer Agency, how involved is he at the Foundation, can we go to him for some suggestions?
– could CCF do some sort of a questionnaire, a “leave your comments and recommendations” sections regarding suggestions, changes, modifications to, Dr`s, hospitals, information resources etc. Maybe then Raye and I could go over them and bring them to the attention of the Canadian Cancer Society. It could help to get them on board.
Raye, what was your experience with the Canadian Cancer Society? Maybe once we have some feed back from the questionnaire, comments and recommendations, you and I set up an appointment to speak to some one in person, at CCS? We would need to put together some sort of presentation… I`m not afraid of making a pest of myself.I`ll email you soon Raye.
I don’t know if either of you are familiar with SKYPE? It’s a wonderful and free way of communicating, speaking live (if you have a microphone) or type chat. Out of country is also free, as long as we talk SKYPE to SKYPE. You can use it to call cell numbers and land lines, but then you have to purchase SKYPE credit.http://www.skype.com/download/skype/windows/
Dianne,
We need to talk and discuss this idea. Unfortunately I’ve been sitting on my hands on this idea myself, always using the excuse I’m too busy. Its time to get busy.
I have website experience as I do sites for various clubs in Canada and the U.S. on a gratis basis. Soon I will be back home in Ontario since my contract here in Montana will be coming to a close by April 27th. I expect to be back home for a week before returning to Indiana for contract work. Being closer to home makes it convenient to personally discuss things with you and others.
Nothing is inhibiting us from making plans though, so we need to have some feedback and discussion from Marion and others on how to approach this. Taking this step in a great idea, but you can’t let it be too overwhelming as it becomes a burden rather than a labour of love. I’m speaking from experience.
E-mail me and I’ll give you my number. We can start our discussion. How’s that Marion??
Dear Dianne….your ideas are great and welcome. Absolutely, a Canadian branch of the CC Foundation is contemplated and in its beginning stages of development. We are in the process of working out the logistics. Your input is highly valued as is that of everyone living in Canada.
We would also appreciate comments. In fact, we could continue with your thread on this discussion board.
How do you envision a Canadian branch of the CC Foundation? Would you like to see a listing of physicians and centers, etc? Similarly, we are ready to start a UK base.
Together, we can do this. Please, keep your comments and suggestions coming our way.
Thanks a bunch,
MarionHi all,
I’m with you on this raye and marions, and I too am willing to do my part. However, I do have a very good idea of what it would take to bring CC to the forefront of the general publics attention.
I know they are not related in subject at all, but the efforts are the same. I am a fine art photographer and have a great deal of experience in the art world, including organizing art shows, volunteering on committees, working with the media, sponsors etc. It can be very time consuming work outside of your daily life to keep the momentum going… and if your already loosing sleep having to deal with CC or are a caregiver, this kind of initiative will only add to it. Although, it would certainly be a diversion and possibly act as some form of therapy to help us deal with CC!
I am willing to help and work with others start an initiative here in Ontario…
I wonder if it’s possible to start a page within the CC Foundation site that just pertains to Canadian content, and or possibly an international page? Maybe this could later lead to a Canadian site, as well as other country sites. I have no idea how to create a site or page, I just use the computer! lol!
I have some ideas on this, and would like to hear from others who are “serious” about getting involved.
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