Myspace page and Talk shows

[Guest guest]

I started a myspace page and put some stuff on it about the psc. On

the home page of this group site is a link to frapper.com which has

a map on it of pscers from all over. I put in on my myspace page

but feel I should make sure it's okay with you guys. If anyone

wants me to remove it I totally can just let me know :-)

my page is www.myspace.com/jmhette if you want to see the page.

Also...

I have been a member of the pBc yahoo group for a while as I was

initially dx with it so sometimes I get conversations confused as to

where they came from.

I was recently contacted by the Montel show about a topic

other than the psc/pbc. The woman is " starting a file " on me and

I'm hoping that I'll be able to talk them into doing something about

psc/pbc. My question is...I know pbcers have talked about email

Oprah and others, is that something this group is trying to do as

well? I know that these diseases need more recongnition, I just

don't want to overstep my boundries.

Thanks guys!

in NE

24

psc dx 8/07

(probable pbc overlap 10/06)

[Guest guest]

ummmm, I don't think putting our frappr map out there for all the world

to see is such a good idea. I'm pretty trusting within our group, but

myspace is a whole other story. Hate to be the one to burst the bubble

but...

jmhette2 wrote:

> I started a myspace page and put some stuff on it about the psc. On

> the home page of this group site is a link to frapper.com which has

> a map on it of pscers from all over. I put in on my myspace page

> but feel I should make sure it's okay with you guys. If anyone

> wants me to remove it I totally can just let me know :-)

>

> my page is www.myspace.com/jmhette if you want to see the page.

>

>

[Guest guest]

,I have tried contacting Oprah, NBC, ABC and various news programs about our PSC Partners Seeking a Cure foundation and all that it is doing to help those struggling with PSC. I've also tried contacting, Redford, LeDoux, Garth Chris's friend, Walter Payton and anyone else who I think might be interested in helping the foundation. If you have any contacts that can help us please email me privately and we can see what we can try.The foundation has accomplished so much and we are only in our 3rd year. I think if we can get the word out that we have a disease with noeffective treatment and no cure, that people would want to help. Especially when they see that we are a volunteer force working together.LeeI have been a member of the pBc yahoo group for a while as I was initially dx with it so sometimes I get conversations confused as to where they came from. I was recently contacted by the Montel show about a topic other than the psc/pbc. The woman is "starting a file" on me and I'm hoping that I'll be able to talk them into doing something about psc/pbc. My question is...I know pbcers have talked about email Oprah and others, is that something this group is trying to do as well? I know that these diseases need more recongnition, I just don't want to overstep my boundries.Thanks guys! in NE24psc dx 8/07(probable pbc overlap 10/06)__

[Guest guest]

Almost nothing on the internet (including this Yahoo! group) is totally secure.

If you are uncomfortable with being on Frappr (although it is a private map),

you should remove your name - or I can do it for you. I don't mean to be

alarmist, but there is software available to strip Yahoo! messages for archiving

purposes. All you need is a valid Yahoo! ID and be a member of a group.

Bottom line - if you don't want any information about you on the internet, don't

use any of the publicly available forums. Even that is not a guarantee, as most

public records are available (for a fee).

As with anything, there is a balance of risk and benefit. Personally, the

benefits of this group (for me) far outweigh any risk.

Arne

---- Gaiatrek wrote:

=============

ummmm, I don't think putting our frappr map out there for all the world

to see is such a good idea. I'm pretty trusting within our group, but

myspace is a whole other story. Hate to be the one to burst the bubble

but...

[Guest guest]

Just a note...I removed the frapper thing from my myspace page. No

worries, I'd just put it on there for people to see that a lot of us

have it. Anyway, just wanted to let you know it's off. :-)

in NE

24

psc dx 8/07

(probable pbc overlap 10/06)

[Guest guest]

YOU GO GIRL...MONTEL DOES A LOT OF GOOD SHOWS ON DISEASES JEANNEjmhette2 wrote: I started a myspace page and put some stuff on it about the psc. On the home page of this group site is a link to frapper.com which has a map on it of pscers from all over. I put in on my myspace page but feel I should make sure it's okay with you guys. If anyone wants me to remove it I totally can just let me know :-) my page is www.myspace.com/jmhette if you want to see the

page.Also...I have been a member of the pBc yahoo group for a while as I was initially dx with it so sometimes I get conversations confused as to where they came from. I was recently contacted by the Montel show about a topic other than the psc/pbc. The woman is "starting a file" on me and I'm hoping that I'll be able to talk them into doing something about psc/pbc. My question is...I know pbcers have talked about email Oprah and others, is that something this group is trying to do as well? I know that these diseases need more recongnition, I just don't want to overstep my boundries.Thanks guys! in NE24psc dx 8/07(probable pbc overlap 10/06)