Leaving

[Imogene]

Leaving?

Thanks Tombliboo, Frank and Havock. Again, I wish you much success with your businesses.
This site is cysticfibrosis.com and is a center and all are welcome. It is when people use it to carp and advertise their own businesses, we may step in.
Probably, we are not going to give carte blanche debit cards to "Sixth Sense....as you so boldly requested. We're also not going to fire Ennio and hire your crowd! Enough said?
Even today, I am sure "telling your story" is not wasted on the 30,000 unique viewers we have every month, so taking the opportunity to tell us about yourselves serves the purpose you are intending.
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.
We quickly put up message boards. Well, she said after a short time, she was tired of them and didn't want to be "the poster child". In MB's defense, CF was at that time a "pre-existing condition" and lots of people were not forthcoming about the disease.
I decided to continue on and most know, I am here 24/7 the past 16 years...going into 17 (July 11th!).
I am the gatekeeper here. We have hundreds of thousands of messages and I have read all of them.
If nothing else, and there is plenty of good news here, we are a center for CF awareness!
As a business woman, I attended many conferences, and had the good fortune to listen to Dr. Tom Fergusen, DrTom.com. He coined the phrase "e-Patient" and he predicted the rise of on line patient communities.
I have watched this happen on a daily basis.
I have written about it and am a popular blogger always bringing this community forward on www.eyeforpharma.com, SocialMediaToday, PharmaPhorum.com and this month your story is featured in the Journal of Case Managers.
My dad was in computers, so I grew up with technology. I am fascinated with all the new tech on the horizon and I look forward to bringing it to you both here and through our non-profit.
Peter, my husband is a doctor of Physical Therapy and we own a clinic in NJ (Suburban Physical Therapy Center).
Salt and Light,

 

[Tombliboo]

Leaving?

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Imogene</b></i> Thanks Tombliboo, Frank and Havock. Again, I wish you much success with your businesses. This site is cysticfibrosis.com and is a center and all are welcome. It is when people use it to carp and advertise their own businesses, we may step in. </end quote>
I don't run a business. I never have done. I set up a Facebook group to offer support and information to women with CF struggling with infertility, parenting issues, surrogacy and adoption.
Nothing that our group does involves finances of any kind. I run it with a friend using our own time because we just want to help others with the same disase as us. All input is 100% voluntary from myself and other women with CF.
All that was required was a quiet message saying "please could you not mention the Facebook group on our site, it infringes our rules" and I would have immediately apologised and willingly deleted any mention of it.
Accusing me of unethical behaviour, banning me from the forum (until a third party interceded) and waffling on about setting me free was so totally heavy-handed and uncalled for. You and your team were perfectly within your rights, but it felt so un-necessary to wade in like that as if I were trying to make money from you or destroy your business. I'm just a Mom trying to help others....not a multi-billion dollar company trying to destroy this valuable website!

 

[Imogene]

Leaving?

Perhaps I have it wrong...aren't you starting a new pregnancy site? One that is growing out of your FB site?
Good luck if you are!
As I said, many sites have started here. We host Julie's IVF site here and maybe even her non profit.

 

[Tombliboo]

I'm sure many sites have started here Imogene but I'm not sure why you keep wanting to imply that ours did? We are based in the UK and launched our Facebook group in 2009, long before I ever mentioned it on here. We have no links to this website at all.

We are not starting a pregnancy site. We are planning to launch a website that deals with ALL aspects of parenting issues for CF patients. Every single bit of it (from the website itself to the pictures and content) will be provided by voluntary effort on the part of CF patients and their families who want to help out.

I didn't actually realise that this website was a commercial business when I used to post. I wrongly assumed it was a charitable venture which would welcome me letting other CF patients know about our support group. The error in that assumption was mine and I fully hold my hands up to my mistake. As I said earlier, it is your website and you have every right to make the rules and enforce them.

My issue was purely related to the sudden, unpleasant and aggressive manner in which I was treated when I declined the offer of partnering with cf.com which I felt was un-called for given the situation of what I had done. As well as the implication that you had set me up and were now honouring me with my freedom and independence, which was totally inaccurate.

I wish you all the best for the future and the success of this website.

 

[Imogene]

Sorry, we host Julie's site/s for free and I think a few others from our community are on our server too. People who have made relationships with us and offer something we don't have.

Glad you are offering the community a great page/site?
Jeanne

 

[Imogene]

Every part of this site, is offered by us and we always pay the community for special projects. Websites aren't free...out of curiousity, will you pay for community help or all is volunteer?

 

[Imogene]

We are a global site, sites have started here globally. People come here from 121 countries and territories.
I'm sorry you didn't know this.
Is your site only England?

 

[Imogene]

Also, my expertise is in this patient community as e patients. I know what I have read and reread here. I always write about the need for this community to have digital...from the first I met you in 1996, when no one could even be together virtually, our site being the first, and always open to all, whether patients, caregivers, partners or industry leaders. We were the first blogs and the first cf videos. We are moving to new frontiers. I believe technology will move us to even more exciting frontiers. I have predicted and witnessed patients having more and more control.
These are wonderful events.
We continue to be at the forefront of health care, as patient leaders.

 

[cf4life]

.

 

[Imogene]

Patients are in control...I'm just witnessing, sponsoring and reporting. It is about CF awareness...and it has always been about support, education and hope!

Good luck to all who are "leaving"....

 

[dasjsmum]

Thanks Imogene for sharing the story of how this site was started, I found the story very interesting.

Aside from whatever issues others have I would like to just make a personal comment:

I have been a member here for many years and really appreciate the fact that this and other CF sites exist. Without access to this site in particular and its well informed adult cf members I would not have been aware of the development of Kalydeco, and my son would not have participated in the ph3 trial and been able to continue to access the drug here in Australia (where it is not yet available). I believe that will enable him to have a long healthy life without loss of health. I do not doubt that he health would have declined significantly over the past three years without Kalydeco (as he is almost 33).

I am truely grateful that I found this site, thank you for starting and maintaining it. I know there have been issues in the past and again now, but I just wanted to comment on the true value of a site such as this (and others too ofcourse) - in making a real difference in real people's lives.

 

[Imogene]

Thanks Joanna. I know you have been and continue to be stalwart for your son's care. You, and people like you are globally changing the face of clinical trials. Now, trials are becoming more accessible and open.
I have personally spoken to people in charge at different pharmas and e-patients like you...make a big difference.
Good to hear your son is doing so well.

 

[Tombliboo]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Imogene</b></i> Every part of this site, is offered by us and we always pay the community for special projects. Websites aren't free...out of curiousity, will you pay for community help or all is volunteer?</end quote>
Everything on our website will be have been created without a penny (or cent!) changing hands...apart from a tiny cost of buying the domain name which I have paid for from my own pocket.
All stories, photographs and information is to be provided by those with CF (or who have children with CF) free of charge.
If at any point we need to raise funds for printed materials etc, then we will become a registered charity here in the UK.
My friend and I launched the UK's main organ donor awareness charity on this basis too (back in 2006) so I know what is possible.
I totally understand that this website is not a charitable concern and is run as a business and I respect that. You have clearly built up a great resource and are a successful business woman. I just wanted to answer your query on how we can run something without paying anyone.

 

[Imogene]

Thanks for the Clarity..and congratulations are the good work you do. We also have a non-profit, giving iPads and tablets to centers and patients. Even charitable sites run on the bottom line. Usually two bottom lines, meeting the needs of the community and keeping the site sustained!
God Speed!

 

[Cherylwithone]

I have never understood why, when people decide to leave a site they make such a statement. I have seen this before on this site and on others. One would think that as adults if we are not happy with something we would just get up and leave. No fuss.

Every site has it faults and the hope is that the good would out weigh the bad. I do not always post but I do read a lot of the post. I have a daughter with CF and I have learned many things from this site. It is also a site that is mentioned at our CF center that my daughter goes to.

If someone wants to start a new site then you should just do so and with out fanfare. That is what is done in the business world. People branch off and start their own company with out all the drama. I never follow people to other sites that cause drama. People in the CF community have enough drama to deal with everyday.

This site will always be a place for people to go to. All sites have rules. That is how the world works. We all do not always like everyone that we meet in person or on web sites. It's free will to pick and choose.

Good luck to those of you that are leaving and starting a new. But, please do so with out drama and respect the people that wish to stay and continue on.

None of this is being said out of meanness or disrespect to those that are leaving. It's just how I feel.

 

[Printer]

Cheryl:

Your comments are perfect. I too support Jon and Frank as they go on with their respective lives and I wish them all possible success in there new ventures.

I never thought that I would ever see the day that I would suggest this but Imogene, it is time to shut down this thread. Then we will be able to get back to the day to day business of this site.

 

[Liza]

I agree with Cheryl

 

[LouLou]

Printer, Threads are not just locked for no reason at all when there is a healthy discussion going on. They are ended when either the direction has veered so far from the originals posters intention or there is ill will directed at a single person in a way that is not constructive criticism.

This thread will work its way of the first page and will die. If you'd like to see it bumped down come up with some more interesting topics to you to talk about and make some original posts. For Jeanne or any mod to lock this post would be against everything Jeanne has said.

Everyone is free to read this post or not. If you don't like it - don't read it

 

[Printer]

LouLou:

You have been here alot longer than I have been and I bow to your experience and knowledge. I have, whoever, seen threads shut down ( usually by Tom, I'm not a Doctor yet) for almost no reason at all.

Lou, I hope that you don't fault me for making a suggestion.

Bill

 

[lilmac7]

I don't see a reason for lockdown as there's good discussion going on here and it's on topic and not getting at anyone. There's allot I'm seeing come to light and would like to respond but unfortunately can't at this moment. Hopefully this stays open so I can o my response later.

I agree with Lauren, everyone is free to read, post or not and if they don't like it then don't read it.