????Joe...Facebook anyone????

[RhondaH]

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

[tricia keegan]

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.

[Margerie]

I would love a her2 facebook group too :)

[DanaRT]

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

[TerriC]

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

[fauxgypsy]

I too am on Facebook.

[loveher]

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

[DanaRT]

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

Dana

[Merridith]

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/

[Midwest Alice]

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

[ElaineM]

Sorry gals and guys I agree with Merridith (http://her2support.org/vbulletin/member.php?u=164) 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.

[StephN]

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

http://www.legalandrew.com/2007/07/21/facebook-and-the-law-8-things-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 ...

[ElaineM]

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.

[vickie h]

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

[RhondaH]

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.

[KellyA]

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

[Gerri]

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.

[Catherine]

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

[Merridith]

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.

[atdec05]

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

[ElaineM]

I am not fearful of Facebook. I am selective.
I am a pretty private person. One cannot be too careful about "what's out there" for the whole world to see and use. I don't want a site like Facebook to have rights to my information.
I don't even click on forwarded messages my friends and relatives send me. I just delete them unopened and
move on to real e-mails from real people bringing me news and friendship.
I also think having one meeting place like we do here is better than having two meeting places. I like our her2support.org site and probably wouldn't visit Facebook anyway.
I would like to suggest that our friends who have Facebook sites, websites or blogs and want visitors from our site feel free to put your contact information in your profile, so thoe who from our site who wish to visit you at other places on the internet can do that.

[Yorkiegirl]

I like this site here just fine for me. I will not ever join a FaceBook, My Space or any other thing like that, as too many things can happen. Yep call me a chicken, but I have heard way too many stories.

[Debbie L.]

I am on facebook, too, for just few weeks now. Most of it doesn't impress me much - lots of idle chatter. But the sharing of photos is a LOT of fun. I really enjoy this way of connecting a little more with distant (in every meaning of that word) family members and email friends. For example, my husband has a large family and we don't live close - if not for the young cousins sharing photos, we'd never see their kids. Even my own kids, who I see and/or talk to on the phone all the time - on facebook I can play scrabble or have a quick chat with them. Or get glimpse into their network of friends. I began as a total skeptic about facebook but have been sucked in. I do warn you that some of the games are highly addictive. Word Challenge, Tetris - do not go there unless you have lots of time to waste (smile).

If we had facebook connections among HER2 group members just for sharing photos, I think that it could enhance our togetherness on this site. It would be a way to welcome all who are interested, without the "clique-y" feel of private posts and private photo sharing. It would of course, be totally voluntary - no one with concerns about privacy or anything else would have to participate. The only thing we'd want to be sure of is that we keep the conversations right here, as they've always been.

Joe, what do you think?

Debbie Laxague

[StephN]

We DO have a GALLERY space on this web site for posting photos. It used to be used more till the site underwent an upgrade.

See the yellow bar above that starts with "HOME" and Gallery is the 4th choice from the left.

There was a way for members to have an "album" before, but I have not looked at this new version closely.

I think we could make fuller use of this site, share and have a little more privacy.

Personally, I don't really have time to go to many other web sites.

[ElaineM]

I like your thoughts StephN (http://her2support.org/vbulletin/member.php?u=85).

[Joe]

This may be one of the projects that the advisory group may wish to address. Other alternatives may be a "blog" or a fliker account.

Regards
Joe

[Merridith]

Just a little update on the copyright issues associated with Facebook membership.

http://www.pcworld.com/article/159703/facebook_privacy_change_sparks_federal_complaint.h tml

[Joe]

I found a program which may work in lieu of Facebook.

Here is a sample website: http://www.sustainabilityforum.com/forum/#

Look at the bottom of the page and also click on "Chatroom" on the navigation bar.

Pros:
You can delete your own posts
No need to reregister, if you are already registered on the forums.
As anynomous as your present registration.

Cons:
Cannot upload photos..We will have a new photo album on our renovated website.

Let me know if this program will work.

Regards
Joe

[RhondaH]

Actually, I LIKE that forum as it is similar to the one for Frugal Village and we can do a lot of fun things with it. Thanks for checking into something. Take care and God bless.

[Joe]

I really need some feedback on this.

SAMPLE FORUM (http://www.sustainabilityforum.com/forum/)


Joe

[fauxgypsy]

Joe, I am wondering why we need another site. Is it so that we will have a more social space? I would not want to lose the sense of camaraderie that we have here or take away from this in any way. So many of the sites are more focused on making conversation but this one is so educational and supportive. Would another site dilute that? Just wondering,

Leslie

[Joe]

The chatspace would become an integral part of our current message boards.

I agree, I really do not wish to go outside our organization.

Regards
Joe

[Debbie L.]

Sorry not to reply initially. It seemed like you were showing us a chat space and I'm not interested in that so I didn't have anything to say.

What I like about facebook is being able to see everyone's photos - their families and their interests and where they live, for example. If the new website is going to have that, then to me there's no reason to do anything else. I did look at the gallery on this site (I'd never noticed it was a choice - it's hard enough to keep up with just this one section!). It didn't seem like we were using it much.

Thanks for working on this, Joe.

Debbie Laxague

[caya]

I would prefer to use this wonderful website, expand/upgrade it etc. for pictures, blogs, etc. if members wish to do that. Since Joe is planning on renovations, why not keep this in mind?

I also agree with StephN - we can make fuller use of this site etc. and maintain some privacy. I also would prefer not to go to yet another website.

all the best
caya

[ElaineM]

I am happy with what we have here. I don't want to go anywhere else. It is the best breast cancer group on the net. It is informative. We can learn alot and find resources. We can form friendships and support or help each other in whatever is going on with out health. I don't need to see photos or other things. Maybe just add a working chat with more options for those who want to chat. Those who want more photos can help you expand the community part of this website if you think that is a good idea.

[vickie h]

I'm with Elain, Stph N , Caya. I don't need more photos, just the wonderful support of those here at this site. Maybe it's because i'm somewhat computer illiterate, but this site is enough for me. Thanks for all the input and suggeations. Just offering you one more....Vickie

[Merridith]

My vote is to stay here with this site. I didn't see any significant advantage to moving to this new site.

But I could envision the technical hassles of moving all our archived historical material over there.....

Not worth it.

[Val Pfeiffer]

I use Facebook and like it for many reasons. However I agree that specific and personal information belongs here on a site like this. I don't thin another site is needed.

However, with that said, I think Facebook might be a great way to help thers find us on this site. If Joe thinks this would work, I'd be happy to set up a group on Facebook for us. It would be something like this:

* purpose would be to support the her2 BC cause.

* include a brief decription of her2

* This site would be listed -- to inform people about it, and then they'd have to join just as anyone would if they found us through other channels.

No duplication or content or anything that duplicates what's on this site. Keep it very simple...use it as more of a "marketing" tool to help interested Her2 people to find this site.

A separate idea is to create a field in our profile on this site to list our individual Facebook link. Then users on this site who would like to be a friend of ours on FB could find us easily.

[ElaineM]

Let's not create more work for Joe, Christine and their helpers (if they have them). Let's have this and let's have that translates into alot more technical work for the webmasters.
I am happy and thankful for what Joe, Christine and their helpers have provided here. I don't need anything else.

[naturaleigh]

I just joined facebook and find it a great tool in keeping up with friends and family.

I was just introduced to a game called Prolific which is a game like Boggle. I think it is helping me somewhat with my chemo brain or at least making my brain work more while trying to figure words out. I invite you all to try it. Go to the search button and type Prolific. There are people world wide playing. To me it is a fun way on making my brain work.

[Joe]

I have no objection to opening up a facebook account.
Please keep in mind that we value the privacy of our members and discourage Spam postings on our website.

Regards
Joe

[ElaineM]

Maybe our members who have Facebook pages, websites and blogs would like to put a link to our her2support.org website on those things.
Maybe our members who have those things would like to post their site address in their profile on this site. Then everybody can visit everybody if they choose to do that.

[atdec05]

I do wordgrid on Facebook. You can also do it on the net (wordsplay.net). It's like boggle and you compete against other people. My brain needs all the workout it can get!

[Jackie07]

It took me quite a while to figure out everything on this board. Call it chemo brain or cancer fatigue, I just think it is important for us to 'focus'.

For those who use Facebook to connect with family and friends, go ahead enjoy it. If you want to invite your Her-2 support Group friends, please put it in your signature so those who are interested can connect with you that way.

I remember using our 'Chat' function a couple of times and didn't really get anything 'solid' out of it. But it was exciting to have received a message from one of the members asking "Do you want to chat?" I think our private message can be a good conduit for one-on-one chat. And our regular postings can really be a good chat - one of our new comers did it in her Thread. She asked a question and gave her feedback whenever a member posted a reply. She became a moderator of her own thread. And everyone had a meaningful, personal 'chat' with her.

Whatever Joe decides to do is completely fine with me. We've got warnings about Facebook from a member who is a practising attorney. I guess if there's any problem in the future, she will be able to explain to us the legal aspect of it.