????Joe...Facebook anyone????
 

Joe I was wondering if we could add a group for HER2 to Facebook? It's so fun to everyones pix etc. Take care and God bless.

Rhonda

That would be fun, good suggestion Rhonda. I joined recently only because a lot of my friends from another site were there. I only get time to say a quick hi to everyone but it's nice to "see" people and get to know them better.

I would love a her2 facebook group too :)

Like, Tricia, I have moved to using facebook a lot more and connecting with BC friends that way. I would love a spot for Her2+ survivors!

Dana

I also just recently started using Facebook and would love a her2 group!

I too am on Facebook.

Yes! i was just thinking of that. I think I'd be a great way to keep in touch and support each other.

There is a group on Facebook for Kids Whose Mom has Her-2 Positive Breast Cancer. They discuss how helpful this site is.

Dana

Facebook legalities
 

If you start a group on Facebook, don't forget to post a warning for digital neophytes who won't read or understand the ramifications of Facebook's legal fine print that members are required to agree to prior to membership.

Anything that you post to Facebook - photos, confessions, and disease diagnosis - is automatically owned by Facebook. They have the right to republish or sell all of the information that they garner. Being a "closed" group is irrelevant.

Facebook has actually exercised very few of its legal rights with regards to copyright. But that doesn't mean that it can't, or that a different company in the future might not purchase the domain along with it's residual rights with an ambition to monetize the information.

Employers and insurance companies interested in risk profiling not only HER2 people but family members as well would be especially interested in the type of information that would be potentially served up in a HER2 Facebook Group.

Anonymity would be virtually impossible because of the very social and geographical networking facility that makes it popular.

Here is a Reader's Digest version of the personal copyright loss that Facebook membership entails. Please refer to item #4.
http://www.legalandrew.com/2007/07/2...hings-to-know/

Couldn't we just put more information on here? More pictures and information.

???Joe...Facebook anyone???
 

Sorry gals and guys I agree with Merridith and Midwest Alice. I vote "no thank you" to Facebook.
If our gals and guys have Facebook pages, blogs or websites why don't they just include that information in their profiles at our site? Then those of us who wish to visit them at those other places can do that.

Better link
 

Hi -
Merrideth's link went to the home page for Andrew's law, here is the one for Facebook:

http://www.legalandrew.com/2007/07/2...hings-to-know/

There is also a BIG Term of Service that says each account is SUPPOSED to be tied to an individual and not a group.

So, I am wondering how we would get around that one.

Personally I prefer to stay with this site - not so public ...

????Joe...Facebook anyone???
 

Wow Steph,
Thanks for posting that link. I for one wish to remain relatively private about my personal business and I don't want anyone or any company having rights to my private or medical information.
We sign all those privacy act things in doctor's offices and hospitals yet some of us are willing to just put all our stuff out there for the whole world to see and know.
Our site is much more private and I appreciate that very much.

Im with Elaine, Alice, Steph, etc. I think sticking with this site would be great. Vickie

I was only thinking that...
 

we could call it HER2 or something silly if we want to keep from disclosing dx. I was just thinking it would be fun to see OTHER aspects of our lives (outside of cancer). I have NEVER discussed my dx on there (nor any other info I don't want disclosed). I just like to go on there to visit with old friends, see family pix, interests etc.

Hi Rhonda,
I am on facebook and would love to have you as a friend. There are some other girls from this site on also and it is neat to get to know each other in other ways. The YSC group that I am part of here in Savannah is on the site as a group and it really works well. I'll have to ask my friend how she set it up.

Love, Kelly

Hi Rhonda,

I have a feeling that those who are fearful of Facebook don't really know how the site works. I joined a few months ago because my daughter lives in Texas and sometimes I can log on just to "see" what she is doing. She posts the most random things -"drinking coffee", "going for a run" - nothing earth shattering or damaging. It's fun and it keeps me even more up to date with her between our frequent phone calls. If we get a group going I will probably join.

Kelly A...

Good to see you. Remember me? You and I compared notes about a year and a half ago. I am doing great and hope you are too. I am really sort of a lurker now. I somehow do not seem to find the time to post much anymore. However, I still consider all my friends on the Her2 site to be the most awesome people I know. I treasure the site, even though I do not post much.

All the best,
Catherine in Oregon

Mmmmm. I don't really agree with Gerri that fear of Facebook or ignorance of how the site works was a motivator for my cautionary post.

I too am a Facebook user and consider myself a fairly high-end digital consumer.

But I would urge the people setting up this group to very carefully consider the possibility of the future potential risk with regards to health insurance access and employment discrimination that the members of a HER2 group would be accepting and complicit in encouraging.

For the sake of debate - how about looking at other types of social networking that are less exposed to commercial exploitation?

One possibility which might appeal to you that could be used in conjunction with this current site is a downloadable tool which gives users the ability to "see" each other in real time when they are simultaneously surfing any website & converse with each other. An example of which is here http://www.rocketon.com/a/index.php. (I haven't researched this example - but there are other analogous choices out there)

Another possibility would be a group membership at Second Life. This is one of the biggest, fastest-growing avatar based virtual reality worlds on the internet. Universities offering classes, banks, law firms and Reuters news wire all have virtual bases in this world. A base can be set up so that membership can be either "open" or "invitation only" http://secondlife.com/whatis/

Another possibility is Twitter - I think Tweets can be anonymized more effectively than Facebook membership.

That certainly is an eye-opener about Facebook.
That said, I do have an account and have friended several Her2 members.
It's nice to share photos that way.

There are other groups on FB like Susan B. Komen, so I wonder how they get around the individual thing.

- Anna
on FB at http://www.facebook.com/people/Anna-Fang/632381336