JennifersHope
New member
Jonathon and Frank I can't wait to see your idea! It must be amazing!
Leaving
- Thread starter Havoc
- Start date
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Furthermore, I never attempted to do any business with the physician we had spoken to, as they don't have the power to make those decisions. But even if I had, I was very much a free agent at that point and still am.
Aditionally, the contacts that I was dealing with I introduced to Medrise, not the other way around. Frank and I were more than willing to work with Jeanne, under the provision that we would remain in control of the development and implementation of our own ideas. She apparently disagreed with that in favor of maintaining full control. As far as a patent, I have applied for one.
Aditionally, the contacts that I was dealing with I introduced to Medrise, not the other way around. Frank and I were more than willing to work with Jeanne, under the provision that we would remain in control of the development and implementation of our own ideas. She apparently disagreed with that in favor of maintaining full control. As far as a patent, I have applied for one.
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SarahProcter
Guest
It sounds like very exciting stuff, and I look forward to hearing more about it. Best wishes!
J
jacobus
Guest
As an infrequent poster but daily visitor to this site for a number of years, it does come as somewhat of a surprise that this is a for profit endeavour. I had incorrectly assumed that the site was affiliated with cff (an assumption I am sure many others make also). Whilst the site does not overtly describe itself as a not for profit, it does appear (at least to me) to be designed in such a way as to lead people to assume that it is a not for profit venture.
I admit that I have never even clicked in the 'about us' page or noticed the M.L Burke reference at the bottom. Having done so just now, the 'about us' page seems go out of its way to avoid making 'technically' misleading statements, however it certainly does not make it clear that the site is for profit. I would even go so far as to say that whoever put that page together, worded it in such a way that encourages people to 'assume' that it is not for profit, without actually making such a claim.
Obviously the domain was available for sale and there is nothing illegal about someone choosing to purchase it an make a for profit website. That said, the thought of someone searching out domain names associated with diseases for the express purpose of making money out of them down the line, sends a chill down my spine. This combined with some of what has been uncovered in this thread, makes the whole thing seem highly questionable to me.
At the end of the day, people with cf do not own this site and the person or organisation who does is free to run it for a profit if they so wish. Personally, I would be feel much more comfortable staying on the site and continuing to recommend it to others (as I have been doing for years), if the about us page included a statement which makes it clear that the site is not a not for profit and is not affiliated with cff. I am also a bit uncomfortable with the 'donate' button on the front page as I think that a person who happened upon the site could well be lead to believe that by clicking on that link they would be donating to research towards cf.
Having said that, my opinion is just that (an opinion) and the site owners are well within their rights to continue as they see fit. For my part, I would certainly be interested in joining a not for profit cf website.
I admit that I have never even clicked in the 'about us' page or noticed the M.L Burke reference at the bottom. Having done so just now, the 'about us' page seems go out of its way to avoid making 'technically' misleading statements, however it certainly does not make it clear that the site is for profit. I would even go so far as to say that whoever put that page together, worded it in such a way that encourages people to 'assume' that it is not for profit, without actually making such a claim.
Obviously the domain was available for sale and there is nothing illegal about someone choosing to purchase it an make a for profit website. That said, the thought of someone searching out domain names associated with diseases for the express purpose of making money out of them down the line, sends a chill down my spine. This combined with some of what has been uncovered in this thread, makes the whole thing seem highly questionable to me.
At the end of the day, people with cf do not own this site and the person or organisation who does is free to run it for a profit if they so wish. Personally, I would be feel much more comfortable staying on the site and continuing to recommend it to others (as I have been doing for years), if the about us page included a statement which makes it clear that the site is not a not for profit and is not affiliated with cff. I am also a bit uncomfortable with the 'donate' button on the front page as I think that a person who happened upon the site could well be lead to believe that by clicking on that link they would be donating to research towards cf.
Having said that, my opinion is just that (an opinion) and the site owners are well within their rights to continue as they see fit. For my part, I would certainly be interested in joining a not for profit cf website.
J
jacobus
Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lilmac7</b></i> Glad this thread was not locked n deleted.</end quote>
Amen to that. Kudos to the site owners and admin for leaving this up. I must say, the fact that they have allowed this discussion is encouraging.
Amen to that. Kudos to the site owners and admin for leaving this up. I must say, the fact that they have allowed this discussion is encouraging.
I am as voyeuristic as the next guy. I like to watch a good fight and see people "wash their dirty laundry" in public. If a situation like this occured when I was in business, I would have brought the principals into my office and discussed it to its conclusion. In private. I would never allow myself to be brought into a PUBLIC pissing contest with an employee, customer, vendor or anyone else.
As I look back to page 1, and beyond, the one thing that I'm sure of is that, of the principals in this disagreement, nobody looks as good as they did before page 1. Jonathan, Frank, and Jeannie are all coming out of this brused. Some bruses based upon fact, others based upon fiction. There is no winner here.
When I suggested that this site be shut down, it wasn't because I thought that the discussion was a bad thing. Rather it is a discussion, better held in a private office.
Since I have been on this site, I have had limited but pleasant contact with the principles of this situation. I wish them all the best of everything.
As I look back to page 1, and beyond, the one thing that I'm sure of is that, of the principals in this disagreement, nobody looks as good as they did before page 1. Jonathan, Frank, and Jeannie are all coming out of this brused. Some bruses based upon fact, others based upon fiction. There is no winner here.
When I suggested that this site be shut down, it wasn't because I thought that the discussion was a bad thing. Rather it is a discussion, better held in a private office.
Since I have been on this site, I have had limited but pleasant contact with the principles of this situation. I wish them all the best of everything.
LisaGreene
New member
I really don't know what all is going on here with this thread as I am not involved in "the mess" and I don't know you all very well as I hang out mostly in the Families thread. But reading through all of this, it seems there are two sides to this story and probably shades of truth and misunderstanding on all ends.
What I do want to say is that I have seen CF message boards "blow up" several times over the years of visiting forums and boards of all kinds. Some have never recovered like a particular Yahoo group for cf parents. It's a ghost town there and probably many of the members came over here. I hope that doesn't happen here; it would be such a loss to all of us.
Honestly, I am all for open-ness and "free speech" and the like but at some point, this really needs to stop. More people get involved, take sides, things are said or read in a hurtful way and it keeps going. This happened recently on a FB page I visit and the moderators wisely took down the thread after it became clear that things weren't getting better, only worse.
Jeanne, I would encourage you to consider doing this if things don't start to become more positive here. Of course you will be accused of "censorship" but honestly, it ends up being better that way than having a continuing stew of negativity. It becomes a self-perpetuating drama. There are some people in the world who like drama and they get drawn to this type of thing. I am NOT accusing anyone here of that.
But even those who seek peace and harmony just can't keep their eyes away from the "accident" on the side of the road. It's human nature....
Peace to all and best wishes for your endeavors where ever they may take you. We are ALL on the same team: FIGHT CF (not each other).
Hugs and HOPE! Lisa
What I do want to say is that I have seen CF message boards "blow up" several times over the years of visiting forums and boards of all kinds. Some have never recovered like a particular Yahoo group for cf parents. It's a ghost town there and probably many of the members came over here. I hope that doesn't happen here; it would be such a loss to all of us.
Honestly, I am all for open-ness and "free speech" and the like but at some point, this really needs to stop. More people get involved, take sides, things are said or read in a hurtful way and it keeps going. This happened recently on a FB page I visit and the moderators wisely took down the thread after it became clear that things weren't getting better, only worse.
Jeanne, I would encourage you to consider doing this if things don't start to become more positive here. Of course you will be accused of "censorship" but honestly, it ends up being better that way than having a continuing stew of negativity. It becomes a self-perpetuating drama. There are some people in the world who like drama and they get drawn to this type of thing. I am NOT accusing anyone here of that.
But even those who seek peace and harmony just can't keep their eyes away from the "accident" on the side of the road. It's human nature....Peace to all and best wishes for your endeavors where ever they may take you. We are ALL on the same team: FIGHT CF (not each other).
Hugs and HOPE! Lisa
S
stranger
Guest
Pulp Fiction, Travolta stares down Willis at the bar, talks to the bartender, who replies 'My name is Paul and this is between y'all.'
What's most disturbing about this thread is now there is uncertainty in my mind about what the word 'private' means to those running this sight in the 'Private Messages' label. It is my belief that there is an assumption of privacy. For me, that no longer exists.
Actually, I never really held that belief. There should be no expectation of privacy on-line. Anywhere. I would even caution those who believe the weekly 'chats' disintegrate once the window is closed - don't believe that. While I have no working knowledge that the weekly chats are logged forever, search this name: Keith Block .
On the technology side of the world, where my vocation exists, I have observed the following: since I sell cloud-enabled technology, my five most trusted, loyal customers, people I am fortunate enough to call friends, all have one thing in common: none of them use social media. No FaceBook, no MySpace (dating myself with that one) no nothing. They know how the sausage is made.
It is not my purpose to yell 'the sky is falling;' my suggestion is to use common sense. Medical records in particular are one of the last bastions of assumed privacy left in the so-called space age. You may not be aware of what you are revealing about yourself until it's too late.
Sometimes it's better to just be, well, a stranger...
What's most disturbing about this thread is now there is uncertainty in my mind about what the word 'private' means to those running this sight in the 'Private Messages' label. It is my belief that there is an assumption of privacy. For me, that no longer exists.
Actually, I never really held that belief. There should be no expectation of privacy on-line. Anywhere. I would even caution those who believe the weekly 'chats' disintegrate once the window is closed - don't believe that. While I have no working knowledge that the weekly chats are logged forever, search this name: Keith Block .
On the technology side of the world, where my vocation exists, I have observed the following: since I sell cloud-enabled technology, my five most trusted, loyal customers, people I am fortunate enough to call friends, all have one thing in common: none of them use social media. No FaceBook, no MySpace (dating myself with that one) no nothing. They know how the sausage is made.
It is not my purpose to yell 'the sky is falling;' my suggestion is to use common sense. Medical records in particular are one of the last bastions of assumed privacy left in the so-called space age. You may not be aware of what you are revealing about yourself until it's too late.
Sometimes it's better to just be, well, a stranger...
C
Cherylwithone
Guest
WOW, What happened to free speech??? I have been on this site for awhile and have seen more drama then I care for. HAVOC, if you have an issue with Jeanne then you should have said something to her in private and not for all of us to see and reply to. Do not send me PM's like this again. Other people have said stuff. I just do not care for drama when we are all trying to help each other in the CF community.
I have lost any respect and will not be one to follow you. Shame on you.
PM from HAVOC to me. Never said I knew everything.
It boggles my mind how people on the internet think that they know everything about a situation. If you look at my OP i simply stated I was leaving and let people know where they could keep in touch.
It was well after that that the current firestorm happened, mostly because of my learning that Jeanne has mistreated other CFers the same was I have been mistreated. And I'm not talking about simple disagreements about how the site should look. I'm talking about blatant theft of intellectual property with the intent to make (a lot) of money off of my ideas.
When you undertand the entire story, please feel free to comment Until then, you remain just another keyboard warrior with an opinion.
I have lost any respect and will not be one to follow you. Shame on you.
PM from HAVOC to me. Never said I knew everything.
It boggles my mind how people on the internet think that they know everything about a situation. If you look at my OP i simply stated I was leaving and let people know where they could keep in touch.
It was well after that that the current firestorm happened, mostly because of my learning that Jeanne has mistreated other CFers the same was I have been mistreated. And I'm not talking about simple disagreements about how the site should look. I'm talking about blatant theft of intellectual property with the intent to make (a lot) of money off of my ideas.
When you undertand the entire story, please feel free to comment Until then, you remain just another keyboard warrior with an opinion.
Did you read my story? Did you miss the bit where I said that I have tried in vain to email and call Jeanne to speak about this on a personal level and she ignored my every attempt?
Don't tell me you don't like drama when you post stuff like this. You clearly enjoy it. Otherwise you would have let it drop.
Whether you follow me or not, doesn't matter.
Printer is right, we all have taken a hit from this bloody mess. We will be lucky if we salvage any vestige of the original plan and the entire CF community will lose because of it.
Jeanne/Ennio or any other mod. This is my thread and I give you my permission to delete it. This has (needlessly) gone way too far. It saddens me that something so great has ended in this travesty. Frankly, we should all be ashamed that we could not put aside our differences for the benefit of the CF community.
Don't tell me you don't like drama when you post stuff like this. You clearly enjoy it. Otherwise you would have let it drop.
Whether you follow me or not, doesn't matter.
Printer is right, we all have taken a hit from this bloody mess. We will be lucky if we salvage any vestige of the original plan and the entire CF community will lose because of it.
Jeanne/Ennio or any other mod. This is my thread and I give you my permission to delete it. This has (needlessly) gone way too far. It saddens me that something so great has ended in this travesty. Frankly, we should all be ashamed that we could not put aside our differences for the benefit of the CF community.
R
RytheStunner
Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Cherylwithone</b></i> WOW, What happened to free speech??? I have been on this site for awhile and have seen more drama then I care for. HAVOC, if you have an issue with Jeanne then you should have said something to her in private and not for all of us to see and reply to. Do not send me PM's like this again. Other people have said stuff. I just do not care for drama when we are all trying to help each other in the CF community. I have lost any respect and will not be one to follow you. Shame on you. PM from HAVOC to me. Never said I knew everything. It boggles my mind how people on the internet think that they know everything about a situation. If you look at my OP i simply stated I was leaving and let people know where they could keep in touch. It was well after that that the current firestorm happened, mostly because of my learning that Jeanne has mistreated other CFers the same was I have been mistreated. And I'm not talking about simple disagreements about how the site should look. I'm talking about blatant theft of intellectual property with the intent to make (a lot) of money off of my ideas. When you undertand the entire story, please feel free to comment Until then, you remain just another keyboard warrior with an opinion.</end quote>
On a similar note, I tend to lose respect for people who divulge the contents of private messages in a public forum. There's a reason that they are private messages.
On a similar note, I tend to lose respect for people who divulge the contents of private messages in a public forum. There's a reason that they are private messages.
I agree with Bill, this conversation should have been had in privacy. In my opinion Jonothan and Frank could have just left the site without annoucing their intention oand without going into the situation at all. If they had done that noone would have been any the wiser that they had left or had issues with Jeane. It is obvious that the initial posting of this thread by Jonothan is an attempt to villify the site while taking as many people with them to their new site as possible.
PS Rye: with regards to posting information from PMs...I draw your attention to the locked thread titled 'really scared' on the Families forum (second page). Frank divulges private information regarding the individual OP and her son which the OP has not mentioned in her coments. The OP asked where he got the information from and whether moderators can access people's medical records. Frank did not reply and Jonothan locked the thread.
PS Rye: with regards to posting information from PMs...I draw your attention to the locked thread titled 'really scared' on the Families forum (second page). Frank divulges private information regarding the individual OP and her son which the OP has not mentioned in her coments. The OP asked where he got the information from and whether moderators can access people's medical records. Frank did not reply and Jonothan locked the thread.
I see it as a reaction from being hurt and betrayed. We can say all the "they should've done it like this" all we want but face it none of us here other than the person who had the Facebook issue has experienced this so honestly I won't judge for how they went about it and honestly as a member of this forum/site the issues at hand that have been brought here I feel better knowing it now.
Incomudrox
New member
<div class="FTQUOTE"><begin quote><em>Originally posted by: <strong>dasjsmum</strong></em> I agree with Bill, this conversation should have been had in privacy. In my opinion Jonothan and Frank could have just left the site without annoucing their intention oand without going into the situation at all. If they had done that noone would have been any the wiser that they had left or had issues with Jeane. It is obvious that the initial posting of this thread by Jonothan is an attempt to villify the site while taking as many people with them to their new site as possible. PS Rye: with regards to posting information from PMs...I draw your attention to the locked thread titled 'really scared' on the Families forum (second page). Frank divulges private information regarding the individual OP and her son which the OP has not mentioned in her coments. The OP asked where he got the information from and whether moderators can access people's medical records. Frank did not reply and Jonothan locked the thread.</end quote>
Also to reitterate again, we tried to have this conversation in private. This post was not intended to spur this conversation but that is where it ended up happening. Would Jeanne have talked to us you know, by answering the phone and/or replying to repeated emails and calls. There probably would have been no need for any of this.
Actually you're wrong AGAIN. The information was publicly posted on a poetry website. You are making assumptions. All you have to do is google that users handle. I took a screen shot of it for safe measure. Just because of people like you. You also are un-aware that the OP was emailing me. Unless of course you are hacking my email???? When you assume you make an ass out of yourself and the person you are assuming about. So 1+ for you. If you would like me to post the screen shot I will.
Also to reitterate again, we tried to have this conversation in private. This post was not intended to spur this conversation but that is where it ended up happening. Would Jeanne have talked to us you know, by answering the phone and/or replying to repeated emails and calls. There probably would have been no need for any of this.
Actually you're wrong AGAIN. The information was publicly posted on a poetry website. You are making assumptions. All you have to do is google that users handle. I took a screen shot of it for safe measure. Just because of people like you. You also are un-aware that the OP was emailing me. Unless of course you are hacking my email???? When you assume you make an ass out of yourself and the person you are assuming about. So 1+ for you. If you would like me to post the screen shot I will.
T
Tombliboo
Guest
As someone who has had problems with the management of this website (which were discussed in an earlier part of this thread), I was initially relieved to see that the admins and mods were allowing a full and free discussion of people's concerns. It now seems to have gone totally the other way and nothing is being gained from the thread continuing. Other issues are being dragged in and mud-slinging is taking place from all sides. Everyone seems to have had their say, I would guess that most of the adult CF population who have used this site in the last few days have seen it, and now everyone is going round in circles fast. I never thought I'd find myself saying it....but may be it is time to say that enough is enough?
HI Frank
'People like me?' what do you mean? Actually, I am not making any assumptions, I am speaking about what I am reading on this forum. If there was more information that you sourced from somewhere else regarding that lady you should have shared publically and informed her of where you received the information from publically. Regardless of where the information was posted regarding that lady, you publically breached her privacy.
Besides, what were you thinking doing a search on her? In the position of power as a moderator you have no right to be seeking background information regarding anyone who accesses this forum, and should always act with the utmost integrity.
'People like me?' what do you mean? Actually, I am not making any assumptions, I am speaking about what I am reading on this forum. If there was more information that you sourced from somewhere else regarding that lady you should have shared publically and informed her of where you received the information from publically. Regardless of where the information was posted regarding that lady, you publically breached her privacy.
Besides, what were you thinking doing a search on her? In the position of power as a moderator you have no right to be seeking background information regarding anyone who accesses this forum, and should always act with the utmost integrity.
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