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The Heyday of These Boards is Clearly Over

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17 replies to this topic

#1 MaryO

 

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Posted 17 December 2016 - 04:33 PM

I don't think it's because fewer people have Cushing's.  

 

I think we're losing out to places like Facebook and other social media.  That's not necessarily a bad thing - I love FB as much as the next person.

 

However, these boards cost (me) quite a bit of money each month.  Normally, I don't mind spending it but when there are so few people coming here to read and post, it hardly seems worth it anymore.

 

I hate the idea of losing all the information we've shared over the years, the friendships that have been forged and the successes shared but...

 

I've been waffling over this in my mind for several months and think that the time to shut these boards down is rapidly approaching.

 

This is like my baby and I hate to do it but it might be time to cut my losses.

 

If there is info that you like here, it might be good to start saving in now, just in case.

 

Any thoughts?

 

 



#2 klukluklu

 

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Posted 18 December 2016 - 03:23 PM

Would there be any possibility to somehow make the database of threads accessible through some file sharing host? The information posted here is a goldmine and I gotta say (literally) my life depends on it.

sad news to hear


Edited by klukluklu, 18 December 2016 - 03:24 PM.


#3 suziet88

 

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Posted 18 December 2016 - 10:05 PM

I concur. I relied on the information here when I was first diagnosed. I must admit once I was cured I did not visit and therefore did not offer support when maybe I should have. But now my Cushings is back I've returned to this board. It would be a sad loss but I do understand where you're coming from Mary x

#4 philb

 

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Posted 25 December 2016 - 01:51 AM

I'm sorry Mary. This site has literally saved my life. I wish I could be more active but mostly the time has come for me to put a lot of it in my past. FB is great but none of the info or conversations are saved. <3



#5 MaryO

 

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Posted 27 December 2016 - 11:05 PM

Glad this site saved your life, Phil - a definite positive thing!

 

I sure understand wanting to move on with your life - you've been through so much Cushings-wise.  I wish you the very best - hopefully, we'll meet again somewhere/sometime.

 

From the last time we met...

 

philb-zebra-undies.png



#6 philb

 

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Posted 29 December 2016 - 01:16 AM

If you'd like I can bring these down to Va. and we can try them on together.



#7 MaryO

 

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Posted 29 December 2016 - 01:49 AM

rofl.gif



#8 Heather76

 

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Posted 31 December 2016 - 04:16 AM

Thank you for all the money you have given out of your own pocket to help others searching for information about Cushing's Disease!  I understand your current dilemma and financially I'm sure it's a lot!  Having said that though I hope there is a way to save this site...that the information here won't be lost forever!  That another group or organization could help defray the costs?  Facebook is great with instantaneous responses but the search feature on here and the way it's organized is invaluable.  

 

These boards are a part of all of us :0)



#9 betseebee

 

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Posted 01 January 2017 - 05:49 AM

I wish there was a way for you to get advertising revenue.

 

I come back here every once in a while--it's a comfort to know that it is here. You saved my life as well, Mary.



#10 Rissa

 

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Posted 06 January 2017 - 05:03 AM

I haven't been on here for awhile and like others said, this site is a godsend Mary! I come back every once in awhile when I'm looking for more answers. Thank you so much for this site. So many people here have offered advice and friendship. I am grateful for it.

#11 Jayne

 

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Posted 02 February 2017 - 09:50 AM

Mary,

I am hoping that a solution can be found to keep this website open. It has so much knowledge for so many undiagnosed cushies and holds too many memories for me. No where else can I look to find "In Memory" for all the cushie friends I've met and known for so many years. it is almost like a high school yearbook. :) I am not on any other social media.

You have touched so many thousands of peoples lives with this site.

Jayne



#12 MaryO

 

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Posted 06 February 2017 - 10:48 PM

Thanks so much, Jayne!  The boards seem to be picking up again somewhat, which is a good thing.

 

Maybe we can find some time/place to get together again?



#13 Twoocean

 

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Posted 07 February 2017 - 04:08 AM

This site has been invaluable to me! I am probably what you call a "lurker", but have read these boards over and over again looking for any piece of wisdom, advice, knowledge, or laugh that will help me understand this horrific disease and why it is happening to me! I wish I could offer some solutions, but right now I am still pretty sick...maybe in the coming months, I can be of help! 



#14 Shaw

 

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Posted 07 February 2017 - 05:15 AM

Welcome to the boards! Sorry you have to be here but I hope you'll find answers to any questions you might have. There are a few of us who that still hang out just in case we can be of help and so much information in older posts that is still so relevant. Take care!



#15 nighthawk

 

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Posted 19 February 2017 - 05:58 AM

This would be a huge loss if the boards close. Surely there's a way to do site backup / archiving. I think the information here is much too valuable to lose forever.



#16 Crystal34

 

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Posted 06 March 2017 - 06:00 PM

Thank you Mary O'Conner for your compassion and dedicated personal time for this site. I'm certain you have helped a large number of people. I am blessed to have discovered your site. Thank you for listening and responding to all inquiries.

#17 SDSather

 

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Posted 20 March 2017 - 05:21 PM

Mary O,

 

You have provided an invaluable service to many, many people with Cushing's and other Cushing's-like diseases and syndromes.   I have a very dear friend I met on the Boards.  I'm sorry you have had to use your own money to maintain the site, but in it's time, it has made a huge difference in the lives of many people.  It has always been an open Board, where one can go to find information, but you are right in stating that many fb pages have been created for people with Cushing's, Addison's and what have you.   Often, you have to be "referred" or "invited" in order to enter those sites, though.

 

You have been a pioneer in this field and you created an avenue for people to find information, when it was often withheld by the medical profession as proprietary.  Thank you so much for all you have done.

 

Susan from the Seattle area



#18 MaryO

 

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Posted 20 March 2017 - 06:39 PM

Wow, Susan - thanks so much for making my day a whole lot cheerier :)

 

I'm so glad you have a good friend you met here - over the years, I have met several wonderful people, too.

 

Thanks again!






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