The AMAZING Teratoma Support Foundation

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Amanda

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Oct 24, 2007, 4:32:52 PM10/24/07

to Teratoma Free Discussion

Dear members,
As a member of both Teratoma Free Discussion AND the Teratoma Support
Foundation, I want to tell you that both are wonderful sources of
support and information to parents.

Please, do not allow Una's bad experience with them to stop you from
seeking their help. They got me through my daughters SCT. The only
time either group is bad is when is stops being about helping people
and more about the politics and fighting between the two groups.

My understanding when Ruth founded this group was that it was to be an
open, friendly group for any and all people wanting support/
information regarding teratomas. I know the reason that Ruth is no
longer a member of TSF, and that is because when things got too
political Ruth stood up for me. I have nothing but the utmost respect
and love for Ruth. She is an amazing person.

Stop fighting. Stop talking shit about the other. Both groups. Nobody
looking for suport needs to hear your petty arguements. Most of them
are dealing with far more important matters, life or death matters.

Please, don't lower the integrity of this group by slinging mud....

Amanda
Mom of the Amazing Charlotte Rene 7 month SCT SURVIVOR!!!

Pologirl

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Oct 25, 2007, 12:27:46 PM10/25/07

to Teratoma Free Discussion

I must say I could not recommend a private support group that is
moderated by people who capriciously throw off (or threaten to throw
off?) its members, esp. not when the members are vulnerable,
frightened pregnant women dealing with a fetal tumor. Sheesh. Maybe
that private group once was good, but it does not sound good now.

My favorite support group during all my pregnancies was the Usenet
newsgroup misc.kids.pregnancy. It is very public and has no
moderators, no owners, just members. You can read misc.kids.pregnancy
on the web via Google Groups, sort of like Teratoma Free Discussion.
You can also read misc.kids.pregnancy via e-mail but even now its
volume of posts is so high that you wouldn't want to. The third
alternative is to read it from a Usenet news server using a news
client.

Misc.kids.pregnancy gets over 200 posts a month now, down from 20x
that volume a few years ago. (All Usenet newsgroups lost a lot of
traffic last year when the Google Groups interface changed.) Look at
its Google Groups
"about" page:

http://groups.google.com/group/misc.kids.pregnancy/about

As that page shows, Google has an archive of posts in
misc.kids.pregnancy that goes back to 1994. (The newsgroup is even
older than that!) Anyway, the Google archive has *millions* of posts,
all searchable, and the Google Groups Advanced Search page is a very
effective search tool. I found answers to many of my questions in the
archive, without needing to post my questions to the group.