I'll say this about ColonTown and Erika. I was invited very early to a list the preceded the Facebook "secret group". It didn't hide email addresses, and she seemed oblivious to the concept, so I demonstrated it to her, but that was set aside when she moved on to Facebook. I was invited early on to it and I'll heartily second what Liz said about "buyer beware". That's a perfect and very neutral way to say it.
I cannot leave it at that myself, however.
I often ask myself, of ColonTown or indeed any other group, "there is this claim or that claim that this group purports to support or be affiliated with. Where is the evidence?"
I'll say that 99.2% of the folks there I will say are well worth visiting with for one reason or another. Having said that, I was removed and banned from the group unilaterally by Erika, no other admin was involved. I was removed over on-topic replies to topics about repeat comments made from time to time primarily by Erika that left me embarrassed that I'd invited ANY ColonClub members to the group. I tried to address them gently in private, but she kept taking it to public threads and I was getting messages from other members who were like minded "but didn't have the energy to write what they really thought", as they were offended to the point of expletives in at least one case. . . (Molly and Colondar rules were misrepresented repeatedly despite all my attempts to gently correct over time, and it was giving ColonTown an agist reputation)
Within minutes of her first contact with me that she felt I was "stirring up trouble" I lost contact with the about 350+ members there. Folks started asking where I was and why I don't post anymore, so I eventually decided to make another secret group, "CRACS", to be owned and run by the members, no dictators allowed, and no money-making intentions, just a friendly group where we can hang out. There are many others, unfortunately the one I would want to point out I can't directly share, but look for "F**k cancer", you might find some familiar names behind some of those groups :-p CRACS at least explicitly targets Colon Rectal and Anal Cancer Support, if I might plug my own creation that I share fully with everyone who might be interested :-p
I will say of the ideas Erika has had for ColonTown, I haven't seen progress on any of them, but then again, I've been out of the group so things may have changed. The ideas historically seem to duplicate rather than fill a gap, unify or augment any other efforts, and she sincerely doesn't seem to understand the negative impact of trash-talking/misinforming folks of other groups and people's intentions. That was my last straw. I will not be silent in the face of denigrating other worthy groups in any way shape or form.
I'm sorry if folks feel I speak to harshly or judgmentally of CT or Erika, but she made her bed in this respect. I feel I've accurately represented my view of her and previously I have invited her to join in here, so she is of course welcome to join and respond to my comments, unlike the comments she has made in her secret group about ColonClub's founder and the Colondar rules and those who organize and run it. My challenge here I feel is a natural consequence of her not involving other folks as I requested for an amicable resolution to our conflict.
2010-07-02 Dx rectal cancer (Stage 3)
'-10-13 APR surgery, 10/18 nodes still active
'-11-22 12x2wk rnds FOLFOX
2011-12-07 Mets X-P
Don't retreat, reload!