Ok now that I have some time I'll respond to what's going through my mind now. And this doesn't mean I'll be leaving here as the people on this forum and the information here I find invaluable. But I just gotta say what's on my mind now.First off I must say from years ago when I first came across this site I was apprehensive to join because I wondered and hoped that it wasn't a means of exploiting CFer for financial gain so I snooped around for a while here just taking in information and upon coming to the conclusion that there's allot of knowledge here and it's a nice place/means for us CFers to connect. All these years I've held back from researching into the owners or anything much other than just being on the forums for research purposes and to relate to other cfers - though couldn't help but noticing the nice very noticeable "Donate" button and wonder what all the donations, links and adverts are in aid of. I just convinced myself that it was for good and to stay away from asking or researching myself. Through the years of me being a member here I went quite a while of inactivity so missed the past drama or "exoduses" as I see it being referred to - Thank God, so the times I would come back to interact/research or whatever were free from this stuff.However, now that this is out (again I guess I can say though I missed the first instances of it happening) I too have a bad taste in my mouth. And my reasons are these tho firstly let me get out the way that I don't see anything wrong with making money from such a site as this as long as something is being given back to the community and or it is being used to run the site such as compensating moderators, tho I'm sure there's people that would do it for free for their association with the CF community but if it's necessary then so be it money will need to be made some way to keep it afloat.So anyway on to my reasons for the bitter taste in my mouth now... A domain name and website hosting is cheap and not that expensive so I see that cost being recovered easily especially being the domain name it is, the advertising and associations on it therefore I don't see those costs being a factor.I find two responses from Immogene particularly contradictory right here in this one thread and I never even had to search: "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"and "Even charitable sites run on the bottom line. Usually two bottom lines, meeting the needs of the community and keeping the site sustained!" Maybe I misread/misunderstood something in there but this on one hand says the site is being subsidized from your own pocket yet on another says and explain how it is sustained through bottom lines/donations or whatever the case may be - so which is it, or was that a "oops I didn't mean to say that" moment now?
The facebook thing that has been brought out here I find totally disgusting and appauling. Why in the world should she be blocked/banned because she started a facebook group to help in whatever way she can for other <strong>CFERS</strong> going through what she is/was going through? Like seriously? Unbelievable!!! But clearly it happened and speaks of the characters behind the scene to me.
Now knowing some history of how this site started, and this is the biggie for me, I cannot help but link some key factors that again bothers me ad is actually the basis of what I feared and didn't want to find out or know if it was the case when I originally found this site but hey now I know."Let me tell a little of how this site began. I didn't have a connection to CF in 1996, but my business partner did have CF. Having set up a business developing HealthCare websites, Medrise bought many key word domains, cysticfibrosis.com being one of them." - this is probably by far the most bothering for me - this shows that clearly and knowledgeably cysticfibrosis.com was bought at the boom of the dot com erra where people were coining money off dot com names - so no gripes with that but this throws a medical aspect into it (which we all know the medical industry is probably the most booming) which says to me to be exploiting for financial gain from illnesses - making money whether directly or indirectly from people who suffer from illnesses. This also states you had no connection to CF which is worse and another big lime in my mouth. You and your husband having a physical therapist business for me again links the way of how you could've/might've came to find out about CF cause back then physio therapy was often done at physio clinics/businesses. Makes me wonder if now you'd have prefered to have bought Pepsi.com or Oprahwhinfrey.com - see where I'm going and how I'm linking this all together? For those not educated enough to know people made a fortune back in the day and still now but not as easily by buying domain names of popular things then when it's wanted by the interested party they either sold it for lots of money or even smarter leased it and collect a fortune over time cause like I say it's cheap to own a domain name. Other ways is also to get enough traffic and even better if it's a very catchy/high ranked name for searches of the topic then they can and chances are will be approched by advertizers, therefore make money. was this and others of Jeanne's domains profitable niches is questionable and I don't have the answer to that but what bugs me is the fact of those connections to that intent is VERY possible....worse so when I see what appears to be the top one www.mlburke.com which states this and I highlighted some points too that stood out to me
"ML<span style="font-size: 9pt; font-family: arial;">Burke Consulting, Inc. is a full service Web development, Women’s Business Enterprise (“<a href="http://www.wbenc.org" target="_blank">WBE</a>&rdquo<img src="i/expressions/face-icon-small-wink.gif" border="0"> founded in 1996. Jeanne Barnett, President, CEO is a visionary and a true pioneer in Internet website design, development and Internet marketing optimization. <strong>With 54 vertical medical and health domain sites, M.L. Burke Consulting, Inc. offers our portal sites as enhancements to dynamic Internet marketing strategies</strong>. We’re branded and extend this unparalleled Internet marketing opportunity to our clients. The professional staff at M.L. Burke Consulting, Inc. consists of Internet technologists, infrastructure technologists, physical therapists, occupational therapists, pediatric specialists, marketing strategists, educators, writers and artists. Our team has the capability to design, develop, maintain and optimally market crafted websites that are creative, functional and cutting edge. We pride ourselves on meeting and surpassing our clients’ needs and expectations. M.L. Burke Consulting, Inc. welcomes the opportunity to work together with medical and healthcare companies concerning their web presence."
This does not sound like an all caring and so concerned person interested in the CF community and to promote research, drug development, betterment of life or anything of the sort for CFers or any illnesses to be honest. I randomly checked domains on the list there and all I checked were owned by her company - Medrise. This all seems of a financal web for "Me me me, mine mine mine".
Again, how successfull all these domains are and all the links and stuff it questionable and I don't have the answer to that but it does look to me like the intent is to make money.
As for giving back with ipads and tablets and meeting with some people in NY/NJ almost means nothing to me and can anyone confirm this?...like I said I have no probelem with a site such as this making money just as long as it gives back to the community and what better way to come across as genuine than to have people here meet "you" but the question is are they meeting the real you or just a front to come back and give good word of their experience so to secure and promote the "genuine-ness" of the site and it's owners. Also the fact that some sponsors would quite possibly just drop out like a hot potato if they didn't see some giving back. I have no idea even if the ipads and tablets is a true thing and honestly yes it might be a nice gesture to kids but how about something like maybe now and then giving/donating a eFlow or something like that someone that doesn't have access to get one, something like that I would find way more beneficial/relevant and would say ALLOT for the intentions of this site!
Anyway I've said enough I think, lastly I'll just say the bitter taste I have for this now is kind of akin to how I feel sometimes when I see allot of foundations collecting to fight to cure this and that and to date I see no cure for anything other than Vitamin C to cure Lime disease - yet scientist have cloned sheep! You kidding me?! They can do something as complex as that so I can only come to the comclusion that at the end of it Pharma companies have no intention to cure anything, just to make therapies that either treat symptoms or underlying causes of diseases cause thay way they make tons of money - there's no way they'll make as much if they do cure then guess what eventually the disease will become nonexistent. And then the part of these foundations collecting money for to assist with these drugs coming out, never have I EVER heard these efforts and donations affecting the cost of a drug to be more affordable due to these causes/foundations/donations, we're just fed - Costs for drug development and to pass regulations are so expensive so is why we have to charge and arm a leg and a head for it. So just as we as people with illnesses are being exploited by the Phama industry I see this as a possible way for us CFers or people with illnesses to be exploited.
End Rant/
The facebook thing that has been brought out here I find totally disgusting and appauling. Why in the world should she be blocked/banned because she started a facebook group to help in whatever way she can for other <strong>CFERS</strong> going through what she is/was going through? Like seriously? Unbelievable!!! But clearly it happened and speaks of the characters behind the scene to me.
Now knowing some history of how this site started, and this is the biggie for me, I cannot help but link some key factors that again bothers me ad is actually the basis of what I feared and didn't want to find out or know if it was the case when I originally found this site but hey now I know."Let me tell a little of how this site began. I didn't have a connection to CF in 1996, but my business partner did have CF. Having set up a business developing HealthCare websites, Medrise bought many key word domains, cysticfibrosis.com being one of them." - this is probably by far the most bothering for me - this shows that clearly and knowledgeably cysticfibrosis.com was bought at the boom of the dot com erra where people were coining money off dot com names - so no gripes with that but this throws a medical aspect into it (which we all know the medical industry is probably the most booming) which says to me to be exploiting for financial gain from illnesses - making money whether directly or indirectly from people who suffer from illnesses. This also states you had no connection to CF which is worse and another big lime in my mouth. You and your husband having a physical therapist business for me again links the way of how you could've/might've came to find out about CF cause back then physio therapy was often done at physio clinics/businesses. Makes me wonder if now you'd have prefered to have bought Pepsi.com or Oprahwhinfrey.com - see where I'm going and how I'm linking this all together? For those not educated enough to know people made a fortune back in the day and still now but not as easily by buying domain names of popular things then when it's wanted by the interested party they either sold it for lots of money or even smarter leased it and collect a fortune over time cause like I say it's cheap to own a domain name. Other ways is also to get enough traffic and even better if it's a very catchy/high ranked name for searches of the topic then they can and chances are will be approched by advertizers, therefore make money. was this and others of Jeanne's domains profitable niches is questionable and I don't have the answer to that but what bugs me is the fact of those connections to that intent is VERY possible....worse so when I see what appears to be the top one www.mlburke.com which states this and I highlighted some points too that stood out to me
"ML<span style="font-size: 9pt; font-family: arial;">Burke Consulting, Inc. is a full service Web development, Women’s Business Enterprise (“<a href="http://www.wbenc.org" target="_blank">WBE</a>&rdquo<img src="i/expressions/face-icon-small-wink.gif" border="0"> founded in 1996. Jeanne Barnett, President, CEO is a visionary and a true pioneer in Internet website design, development and Internet marketing optimization. <strong>With 54 vertical medical and health domain sites, M.L. Burke Consulting, Inc. offers our portal sites as enhancements to dynamic Internet marketing strategies</strong>. We’re branded and extend this unparalleled Internet marketing opportunity to our clients. The professional staff at M.L. Burke Consulting, Inc. consists of Internet technologists, infrastructure technologists, physical therapists, occupational therapists, pediatric specialists, marketing strategists, educators, writers and artists. Our team has the capability to design, develop, maintain and optimally market crafted websites that are creative, functional and cutting edge. We pride ourselves on meeting and surpassing our clients’ needs and expectations. M.L. Burke Consulting, Inc. welcomes the opportunity to work together with medical and healthcare companies concerning their web presence."
This does not sound like an all caring and so concerned person interested in the CF community and to promote research, drug development, betterment of life or anything of the sort for CFers or any illnesses to be honest. I randomly checked domains on the list there and all I checked were owned by her company - Medrise. This all seems of a financal web for "Me me me, mine mine mine".
Again, how successfull all these domains are and all the links and stuff it questionable and I don't have the answer to that but it does look to me like the intent is to make money.
As for giving back with ipads and tablets and meeting with some people in NY/NJ almost means nothing to me and can anyone confirm this?...like I said I have no probelem with a site such as this making money just as long as it gives back to the community and what better way to come across as genuine than to have people here meet "you" but the question is are they meeting the real you or just a front to come back and give good word of their experience so to secure and promote the "genuine-ness" of the site and it's owners. Also the fact that some sponsors would quite possibly just drop out like a hot potato if they didn't see some giving back. I have no idea even if the ipads and tablets is a true thing and honestly yes it might be a nice gesture to kids but how about something like maybe now and then giving/donating a eFlow or something like that someone that doesn't have access to get one, something like that I would find way more beneficial/relevant and would say ALLOT for the intentions of this site!
Anyway I've said enough I think, lastly I'll just say the bitter taste I have for this now is kind of akin to how I feel sometimes when I see allot of foundations collecting to fight to cure this and that and to date I see no cure for anything other than Vitamin C to cure Lime disease - yet scientist have cloned sheep! You kidding me?! They can do something as complex as that so I can only come to the comclusion that at the end of it Pharma companies have no intention to cure anything, just to make therapies that either treat symptoms or underlying causes of diseases cause thay way they make tons of money - there's no way they'll make as much if they do cure then guess what eventually the disease will become nonexistent. And then the part of these foundations collecting money for to assist with these drugs coming out, never have I EVER heard these efforts and donations affecting the cost of a drug to be more affordable due to these causes/foundations/donations, we're just fed - Costs for drug development and to pass regulations are so expensive so is why we have to charge and arm a leg and a head for it. So just as we as people with illnesses are being exploited by the Phama industry I see this as a possible way for us CFers or people with illnesses to be exploited.
End Rant/