[Lani]

I know my strengths and limitations and know I am not the one to take this forward...perhaps my role is best as instigator and fact-finder.


In order to contact these people I have already spoken with and in order to be taken seriously by others with whom I may come in contact, it would help to have up to date stats on this site. I am not pretending to have anything to do with this site other than posting on it and often felt there was an uneasiness having me post altogether. I do not pretend to those I talk with that I can deliver anything, only that I can contact many with her2+ breast cancer, a number of which (we will see how many) might be willing to donate their specimens, allow access to their records and perhaps agree to other requests (serum, buccal swabs,etc). They understand I have no relationship whatever with the organization that runs this website nor do I sit on its board or do ANYTHING but post when allowed.

I found that back in April of 2005 you posted the following:
04-20-2005, 10:24 AM #1
Guest

Posts: n/a

As with many internet websites, we have a counter integrated on our website. IT IS NOT SPYWARE !!!. This is a valuable resource as it gives us a ton on information which we use to manage this site in order to make it more user friendly. We know what pages were visited most frequently, how much time was spent on the website, what operating system and browser the user had. IT DOES NOT GIVE US INFORMATION ABOUT THE INDIVIDUAL USER and protects your privacy.

I check this daily as it indicates the "health" of the HER2 Support Group.

Monday was our busiest day ever with 715 visitors to our website, almost 30 visitors an hour.

Here is a list of what countries visited our site in the past 24 hours

825 United States
39 Canada
35 United Kingdom
23 Netherlands
11 France
10 Qatar
9 Italy
9 Austria
6 Australia
2 Finland


Statistics like these makes it seem all worthwhile.

Warmest Regards
Joe

Joe, I also see that registered members now exceed 2200. Has the geographical mix of the registered (and nonregistered, if you can ascertain that) visitors changed? Is there any way to determine how many visitors there are as well as how many visits ie, the average number of visits per visitor or can cookies tell even in nonregistered visits if the same person is lurking again and again?

Let's see who/how many come forward to volunteer their specimens, vs who/how many come forward to help organize, market, fundraise, etc for this registry.

My degree of further participation will be decided as things evolve. In the meantime, please don't view me as aloof, cold or not a team-player, just as someone whose generosity/volunteerism has limits and for whom privacy is paramount.

I agree that there are a lot of funding possibilities, but I KNOW that I am not the one to take the project in that direction.

Let's see who/whether someone(s) come forward to take things further.

I believe you provide an incredible service by running this website(and aren't thanked often enougth), that it has been a tremendous help to thousands(hopefully we will soon get an updated figure on those thousands), and am grateful that I have been allowed to use it to post information which I hope is useful, hope-generating and/or just stored up as ammunition for the future by those it can potentially benefit.

With all respect,
Lani

PS I think No. Carolina has started a registry, particularly to look at the disparity in survival of Afro-Americans.