<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>RytheStunner</b></i> CF shouldn't be a money-making scheme. </end quote>
If only we could get this point across to the drug companies for all illnesses - oh what a nice world we'd live in!
Why does anyone think that they have the right to the financial dealings of this site. Unless you are a stockholder, that information is none of your business. The financial operation is only the business of the ownership and if they chose to co-mingle the funds with and other sites is their right and tha is private information.
We are nothing more than non paying accounts of the owners. You may buy gas at the local filling station, that does not allow you to see their books or tell them how to run their business.
The owners allow us to use this site. That is the only allowance that we have.
Neither are you. I would, however, disagree. This is a Cystic Fibrosis Information source and as such it is part of the MEDICAL INDUSTRY. I would remind you that nobody is requiring your attendance here. Additionally, should you wish to put your money and time into building a site, as the owners here did, you can run that site as you like.
Because my situation has been discussed in this thread (by Kristen and Loulou), I would just like to clarify exactly what happened. I am not out to attack anyone who runs this website, it is their property and they are in their rights to act how they want to. But I felt that I should clear up what happened.
In 2008 I was going through infertility issues and looking for support and information on issues such fertility treatment, parenting etc. for those with CF. The only forum I could find that covered anything to do with this was the pregnancy forum on here but, although I used it a lot, I found it didn't really meet a lot of my needs for various reasons (e.g. my country's healthcare system is very different from the US one, there was no section for parenting advice and no where to discuss things like adoption or surrogacy).
I therefore set up a small Facebook support group relating to all CF parenting issues and used to mention it on here if I felt someone might benefit from it. The group gradually grew by word of mouth but everyone who found it always said they wished they had known about it years before, so I felt it important to keep telling people about it around the world in case it could help them.
In January one of our FB group members (who I now understand is involved in this website) messaged me saying they had spoken to Jeanne Barnett who would like me to consider the group becoming part of cysticfibrosis.com and explaining the advantages it would offer us. At this point there was no suggestion that I was doing anything wrong in telling people on the pregnancy forum about the Facebook group, which with hindsight I wish there had been as I was totally unaware that I might be upsetting anyone who runs this site by doing so.
After thinking it through very carefully and discussing it at length with my friend who runs the FB group with me, we decided we would prefer to remain independent and keep our long-term objective of eventually setting up our own dedicated CF parenting site. I contacted the person concerned and thanked her for the offer but explained our decision.
Sadly as an immediate result things changed very abruptly and I was informed that the admins had issued an immediate ban "stated as unethical behaviour". I was told that my posts had only been allowed before as a "gesture of goodwill". I was told that nearly all CF sites on the worldwide web had got their start at cysticfibrosis.com and that since I too wanted my independence they "would honour that and set me free".
I found all this incredibly bizarre, especially the abruptness of the change from informal chatter to official banning, mentions of unethical behaviour and being told I was being set free and the total change of tone in the relationship.
I was quite hurt to find that my behaviour (in wanting to help other women with CF on a totally voluntary and non-profit making basis) was seen as 'unethical behaviour' and wished that I had been told during the preceding months that I should not be telling people about the FB group as I would have immediately stopped and respected their wishes.
As I say, this is not about me wanting to attack anyone who is involved with the running of this website. It is purely about setting straight what happened because it has already been discussed in this thread by others.
Also I just wanted to say that although I don't tend to post on this site, that is for other reasons...basically I beecame very concerned about the fact that my personal information can be shared with all kinds of third parties. There is no option to opt out of this and I do wonder how many people who post realise this. For the full information on what is shared about you by this website see: http://www.cysticfibrosis.com/privacy.cfm "We may enter into alliances, partnerships or other business arrangements with third parties who may be given access to personal information including your name, address, telephone number and email for the purpose of providing you information regarding products and services that we think will be of interest to you. In connection with alliances, partnerships or arrangements, we may also provide certain information to third parties if we have determined that the information will be used in a responsible manner by a responsible third party. For example, some of our partners operate stores or provide services on our site, while others power offerings developed by us for your use. We also use third parties to facilitate our business, including, but not limited to, sending email and processing credit card payments. In connection with these offerings and business operations, our partners and other third parties may have access to your personal information for use in connection with business activities. As we develop our business, we may buy or sell assets or business offerings. Customer, email, and visitor information is generally one of the transferred business assets in these types of transactions. We may also transfer such information in the course of corporate divestitures, mergers, or any dissolution."
I think it might be good if this agreement is put somewhere in the information before users sign up just so that people understand that their information is not being given in confidence?
@Printer - you're right, I'm also not part of the medical industry...which is why I'm not making any attempts to profit off of it. Unfortunately, your ignorance of the situation, and overall ignorance in general, doesn't qualify you much to speak on the situation at hand.
It's interesting. Since announcing that I was leaving the site I have gotten many personal emails. The stories are always the same.
1. CFer has a talent or skill and is recruited for work on the site or to benefit the site in some way.
2. Once there is an opportunity for money to be made the relationship changes dramatically, the CFer with the skills are pushed to the periphery (or out) and all the focus is about making money off those skills or ideas.
3. Mass exodus from this forum ensues.
From what I can tell, this will be at least the 3rd time this has happened. It really is sad that a group of people who struggle with so much, yet can still offer valuable skills or ideas, are used and then dropped faster than 3rd period French once the idea is fleshed out and the opportunity for money to be made is paved.
CysticFibrosis.com has been in existence since 1996! This is before Google and Facebook. Many people, like Frank and Jonathan, have started websites and even businesses from this site. Ronny Sharpe, Jerry Cahill, Emily Schaller and others; lots of bloggers used this site to get started.
Peter and I have never hesitated to keep the lights on. We always compensate CFers for their expenses and various projects. We have never talked about it, but we count many as friends, visit them in hospitals, attended too many funerals and often have facilitated transportation, housing and boarding costs for people who assisted dying members in their final days. LightnLife and Jazzysmom spent a lot of time with us here in NJ.
We are always looking for ways to make the community brighter and better. People who know us, know all the money goes back to this community. Frank and Jonathan, too, are part of the compensated history we have gladly covered.
We always thought it would be good if one day cysticfibrosis.com could be a self sustaining site continuing to provide project based employment to members, except not from our personal funds as it does now.
As a computer teacher, I am always looking ahead to new and better ways to communicate.
Frank, Jonathan, Ryan and Charlie have a business: Sixth Sense Healthcare Innovations Inc.
They used this site to get it started (and they still are?)
They generously helped a lot of members and now they chose to move on. They say they are now at CF2Chat and they plan to move on from there also.
The good thing is there are lots of choices for places to go on the web.
We wish Jonathan and Frank and all…God Speed and good luck with their business.
Salt and Light!
Imogene - your website is your website and you are fully entitled to make and administer the rules as you see fit. However I found my personal treatment to be very hurtful and upsetting. In trying to (voluntarily and without any personal gain or profit) help other women with CF, I inadvertently over-stepped the interpretation of the rules by telling people about a Facebook group that might offer them help. At no point did I ever receive any requests to not mention the group in all the months that I was posting. Then suddenly, when I gratefully declined the offer of partnering with this site, I was immediately banned for "unethical behaviour" in a quite unpleasant manner and my posts were all deleted. If someone had spoken to me beforehand and asked that I not mention the FB group, or gently pointed out that it was not allowed in the rules, I would immediately have respected that. I also found myself confused as to why you said that you were "setting me free" as I was never part of you and my website had never had its roots in yours (I can't think of more than 5-10 of our 210 members who ever found out about our group from my mentions on here and I am able to know because its a closed group so all members must come through me). I don't know the details of the person's story that this thread is based on, so I will refrain from any comment on it. However, having seen you posting (and never spoken with you directly before) I just wanted to let you know this.
It would have been nice, Jeanne, if you had responded to my emails and phone calls, rather than removing my admin and mod rights, deleting my email account and my blog on techcf.org (but not before plagiarizing it's contents) . I suppose you don't really care about your behavior, until it's exposed on the internet, and then you feel the need to do damage control.
It would have been so much simpler to just have had the decency to speak with Frank and I and work out an agreement. But, you started having meetings behind our backs to build YOUR business. Thus, we created our business AFTER it was clear you had pushed us out. Up until that point, we had every intention of working with you for the betterment of the CF community and even your own site.