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New member
Or you can do as they've said and email them and once they have it they'll email you the details, can't get anymore convenient than that. Plus something tells me a post of such would quickly get deleted as I'd highly doubt any forum owner would want their followers going somewhere else.


Digital opinion leader
Oh my. I'm sorry to hear you are both going elsewhere. Your advice and expertise have been valuable. Best wishes!


You guys have helped me tremendously. To not follow you guys would be stupid on my part. I support you two every step of the way!


New member
Two of the most intelligent and high contributing posters leaving, that's a shame. I have no idea what's happening but I'm going to email you because I would hate to mss out on future discussions/ advice!


New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LouLou</b></i> <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Kristen</b></i> I just sent you an email. I also know someone who was kicked off this board for sharing information about a facebook group for people with CF. Ridiculous. :::wondering how long it will take for this thread to be deleted:::</end quote> Kristen, I was trying to get the person you speak of to ofinstead of recruit people away from our site to their group (FB group leading to a website)to work with us. I saw a mutually beneficial opportunity. ...In the meantime as they pondered it, I actively let them solicate people through PM and through advertising on her signature. In hindsight,I was way too laid back about it, it broke the agreement we all sign as members. When they decided not to there was a 12 hr block on the persons acct until we decided what to do. The block was removed she was asked to stop advertising and recruiting from our site. She should still be able to access the site. I hope this helps clear the waters for you. I value your imput on this site and in an effort of full disclosure I consult for Jeanne on occasion for various projects. Few cf organizations pay cfers for our vaste knowledge but Jeanne and Peter do! After 17 years this site still is not self sustaining. Can we really fault Jeanne and Peter for wanting to find sponsorships, partnerships, so this site can financially stay afloat with subsidy?</end quote>

Lauren, thank you so much for that explaination. It is a little different from what I understood happened. I did not know it was only a 12 hour block. But, it did bother me that she was not allowed to share the fb group with the site simply because I feel like we CFers can use every resource we can get, and the fb group is only found through word of mouth. And I didn't see that group/future board as pulling away people from the site because it's about one very specific CF-related topic, so people would still come here for the other CF stuff. I didn't really see it as a competitor. But I'm sure it would take hits away from this site.
I also have never faulted Jeanne and Peter for having sponsers. I don't even care if they make money - I would think it would be good for them if they could make money while providing a forum such as this that helps other people. I joined this site right at the same time there was a mass banning going on several years ago - I don't know exactly what happened, but it does make me skeptical about how things are handled on here sometimes.
The two of you have such a wealth of useful knowledge...I respect and
have learned a lot from you. In my years of mostly lurking I've tried to stay out of every conflict. I don't really know what happenned or if those of us with uncertain membership in the CF family are even welcome on this new forum but I am very sad to see a rift this deep form...and hope one day it can be healed.

In disgnostic limbo for decades (its complicated)


New member
I have met Jeanne and she was amazing to me..simple amazing and it is really hard for me to think anything different . Honestly....I wish I knew what was going on. I have been on here for at least 10 years....

This page is one of many pages owned by Jeanne. This is her job....of course she is going to try to make money and I support that. I personally feel that it should not be at the expense of other Cfers not being able to,share information....

All,of us need as many resources as possible... All of them....it is to small of a community to be divided.

I hate another split,to,happen....everyone is already all over the place .....


Super Moderator
Havoc, Incomudrox, and those who may follow: I can't adequately express my feelings. But of course I'll try to anyway. The two of you feel like you're my kindred spirits. You posess wit, compassion and intellects I enjoy and admire. I am staying here, but I intend to join you at your new home as well. I recall a recent 'bad doctor experience' post whereupon a doctor flipped out after she informed the doctor she was positive for Pa. After several consoling posts, you asked how resistant her Pa was. Umm, now why didn't I see that one coming? Whether your question was just a curiosity or a rhetorical that begged a more pensive examination, which I have watched you, and know it was both. In five words you cut through to the real issue, especially relevant for CFers. Absolute brilliance! It is what I have come to expect and enjoy, and either of you could have written that post. Since I expect to join all who are leaving this forum I won't be missing you. But so many who just remain as well as the ones yet to come will. Take with you my best wishes and good luck.


New member
Alot of people may not like what im fixing to say..but my personal experience with "Havoc" was always some kind of issue..i could t say anything in here without a smart remark or comment..let alone kicked me off the site because conclusions were assuming my profile was fake and that he wanted me to show copys of my discharge papers to prove i had cf??? Who does that?..thats my personal info i dont need to send that kind of info to prove i have cf sorry i dont know you why would i do that?..never realy understood why he had personal issues with me but i believe what goes around comes around.


New member
This is the first time I am hearing about the facebook issue, but I agree that knowledge is wealth. I would not see a problem with sharing the facebook group at all!! In fact I think I learned about the facebook group through here and greatly appreciate it!! I still visit this forum almost everyday and facebook as well. The facebook page has not changed my participation with this forum in the least. As CFer's and CF parents we NEED all the knowledge we can get our hands on because CF for lack of better words is extremely complicated, with new issues arising all the time. Just about the time I think I have a good grasp, CF shows me how very wrong I was. I love this forum and I love my facebook group and wouldn't trade for either. It is the people that participate that make or brake it in my opinion and it is very sad to loose these 2 very knowledgable guys. They were a huge asset in my opinion to this forum. I do not know the people who made this wonderful forum, but I would assume that they have a connection with CF and would understand how much we CRAVE knowledge and would not begrudge anyone the chance to receive that knowledge, whether it be through facebook or any other forum. That's just my thoughts.


New member
We should be ENCOURAGING one another to do research, use ALL available communication options, share our thoughts as well as findings and it is a shame if we try to prevent it.


New member
Just to clarify...posting about other sites, facebook groups, etc. is not a code of conduct infraction. What is is advertising another site. The difference? regularity and tone - a mention here or there is one thing doing something on a schedule is advertising IMHO.

Many other sites have gotten their start here. Jeanne and the mods let a lot slide from authentic members before ruffling any feathers. Posters who arrive on the site and outright advertise are often removed before anyone ever sees them. We feel that those who chose to try to gather info from us or push product on us should pay our site.

I wish Incomudrox and Havoc the best. I'll always be grateful to Incomodrox for replying to my plead for Cayston while I was traveling in Philadelphia. And I should say saved Jeanne the trip of bringing Cayston down to me from a member who lives around an hour from her. While I wish parties could have worked things out, sometimes business doesn't work like that. Hope to see you both "around!"


CF shouldn't be a money-making scheme. CF.com isn't selling anything, so I don't see an issue with "advertising" another CF social information site unless it's clearly spam.

We're here to network with other CFers and share information, not to generate revenue for people.
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