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18 replies to this topic

#1 staticnrg

 

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Posted 25 August 2013 - 05:27 PM

Do you want to keep the Cushing's Help message boards?  Do you know that MaryO spends thousands out of her own pocket to keep it running?  Do you want to wake up one day and find it gone?   

 

If the answer to the last one is "no", then take the time to donate what you can each month/quarter/year.   I know I'm not here much anymore since my BLA, but I still care that others have this support.  I would have never found a doctor to help me nor understood this disease if it hadn't been for this site.  There are so many more out there who need them, too.  If you are here, I suspect you do, too.  
 

If you look at the right side of the main page when you login, you will see the donation site and Donations: 801.61 USD || Goal Amount: 2906.00 USD. 

 

It shows we still need to donate at least $2104.39 for this year.   

 

So, skip that lunch out at McDonalds or Wendy's and donate the $5 or $6 dollars instead.  PBJ will taste really good that day!    If we all donate just a little bit every month, it will make a difference.

 

Thank you,

Robin

 

 

 



#2 conti

 

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Posted 26 August 2013 - 12:15 PM

Hiya Robin,

 

Good to see your name here again...hope you're doing better.

 

I agree with you entirely and it is so embarrassing that folks have to be embarrassed into making a minimal donation to support a facility which is of tremendous value to all who come here.

 

....and you know doing without those Big Macs and the other stuff would also help with weight control a little.

 

In the UK we have a National Health Service which is essentially funded by employees' compulsory contribution until they reach retirement age and then you get a pension based on how much you've contributed over your working life. I think generally US ages are considerably higher than here in the UK and therefore you have the capability  to buy your health care. 

 

Would $10 really be difficult for most people or are they just happy to let a few, including the creator of the site, pay the dues.

 

Count me in.

 

Best wishes

 

Dave



#3 Guest_Joey21_*

 
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Posted 26 August 2013 - 03:04 PM

how do you donate? i have paypal....could donate a couple bucks



#4 conti

 

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Posted 26 August 2013 - 07:01 PM

hiiJoey,

 

f you look at the right side of the main page when you login, you will see the donation site and Donations: 801.61 USD || Goal 

 

 

PayPal is good and anything helps, thanks.

 

 

Dave



#5 MaryO

 

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Posted 28 August 2013 - 11:31 PM

Thanks so much, everyone!  I really appreciate your donations and subscriptions.  They truly help keep this site going.



#6 MCF

 

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Posted 31 August 2013 - 05:37 PM

Thanks for the reminder, Robin and thanks MaryO, once again, for these boards and for keeping all this archived information online at great effort and expense.

Off to Paypal you a donation right NOW.



#7 Rissa

 

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Posted 15 September 2013 - 10:49 PM

I havent been on the boards in awhile, but this site has helped me so much.  Donation just sent!



#8 MCF

 

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Posted 16 September 2013 - 05:39 PM

The year is almost over and we've contributed only about 1/3 of the costs needed to support this site.   There are plenty of folks without the means to contribute, but many folks who can spare a buck or ten.  The archives on this site alone are priceless, there's nothing and nowhere that can help us save our own lives the way they have and will.

If we keep the site up and running.

 

Thanks to MaryO for not giving up on it and us.



#9 NES

 

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Posted 29 June 2014 - 02:27 AM

Here is my "donation" (as i'm disabled by cushing's and phyical health issues.. and can';t work -- so I really don't have much to give). My knownelge with computers and budging is something I am good with.

 

I'd be a lot more willing to donate money and contrbute to this this forum if the board was setup at least in a way that isn't frustrating to scroll down and view every single subforum and promotive "link". I also think the adminstration could cut down there "cost" of the site in 3rds (after reading the google doctument) the money/ donations aren't just going to the forums but a bunch of dead domain names that aren't needed.

 

Mary posted this google doc in several places -

 

https://spreadsheets...uthkey=CNPqo8IC

 

"advanced SiteLock" -  What site are you going through? - Site lock's are a SCAM.

 

The site doesn't have http or https.

 

cushie.info advanced SiteLock- $200 - Really?  If this is yearly there is a HUGE probem here.

 

"Cafepress (tshirts, etc) $6.95 --- $83.4"   - You have to pay Cafepress? there are free sites that wont charge you It seems that you are paying them so they wont take fees out of the royalties. I almost think the charge per royalty selling might be best in this case ~

 

 

"Virus scanner for cushie.info  $32.01" --- there are free ones on the net that I have personally used for websites that work wonders.

 

"Cushings Help (Network Solutions - Domain Name Registration) $37.99" "  - You can get domains for $12 each, ALSO this is included with Domain Name Privacy (No charge).
 

If I'm understanding this correctly total (just 2013) is $553.62/year for the domains.

 

Under one domain = $12/year, all six = under $80/year.

 

I also notice you have the following domains  (more then the 6 you list) 

 

http://www.CUSH.org
http://cushings-info.com
http://www.cushings-help.com
http://www.cushingsonline.com
http://www.cushings-support.com
www.cushie.info/
http://www.cushings-info.com
http://cushingsbios.com/
 http://www.addisons-help.com/
 http://cushieblog.com

..

 

 

IPB boards offer a plugin for the wiki - http://www.ipbwiki.com/
 

 

^ That cuts $79 a year

 

If this doc that you show is true.. you are wasting $100 of dollars on it yearly..


Edited by NES, 29 June 2014 - 02:38 AM.


#10 NES

 

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Posted 29 June 2014 - 02:44 AM

Don't get me wrong this is the ONLY cushings forum out on the interent and we have to work with what we got - however, a lot of us ARE disablied by Cushings and can't donate but feel bad and reviewing the list makes us feel bad we can't donate... if the cost was cut down I'm sure we'd be able to help with the goal a lot more.



#11 MaryO

 

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Posted 29 June 2014 - 02:59 AM

Random notes - Thanks for your input NES.  I'm sorry you find the boards frustrating.  They used to be one thread which people wanted split into individual topics so they'd be easier to find.

 

I have not owned CUSH.org for many, many years.

 

I have not updated that spreadsheet for possibly a year or so - I can't remember.

 

I have advanced site lock because there are more pages on the cushie.info site than a regular site lock will process.  Last year there was a major hacking attack on that site and I never, ever want to have to go through that again.  Site lock helped me clean that up.

 

However, I have found another way to combat this and I will be discarding that service when it expires.

 

I have a separate wiki because everyone who is in need of Cushing's information  is not a member of the message boards.

 

Many of those URLS you list are blogs on Blogger.com and Wordpress.com  

 

No one here is required or even asked to pay anything for the information, help or support they get.  I do ALL the work on these sites at no charge to anyone.  Since the costs are over $1600 more then the donations each year, the "wasted $100" is mine.  I have picked up all the excess charges.

 

When people suggest things like Wikis, doctor lists, whatever, I do it.  No one volunteers to help with anything.  
 



#12 MaryO

 

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Posted 29 June 2014 - 03:34 AM

This is not the only Cushing's forum online.  Facebook is over-run with Cushing's groups.

 

I just did a google search for "Cushing's forums" and came up with about 187,000 results.  Of course, some of those are for dogs. So, there are other choices.  

 

Be aware that some cost and they aren't nearly as transparent about what the funds are used for.



#13 NES

 

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Posted 29 June 2014 - 04:17 AM

This is not the only Cushing's forum online.  Facebook is over-run with Cushing's groups.

 

I just did a google search for "Cushing's forums" and came up with about 187,000 results.  Of course, some of those are for dogs. So, there are other choices.  

 

Be aware that some cost and they aren't nearly as transparent about what the funds are used for.

 

I wasn't meaning hosted support groups - re: facbebook groups, and other non .com sites as "support forums". 

 

Be aware that some cost and they aren't nearly as transparent about what the funds are used for.

 

Noted -- and yep, I pretty much know that.. and I've done about 3 hours worth of research to see if there was another human cushings' forum and they all link back to this one. Every other site was run by a marketing company, which cost to even join ~

 

-----

I just get somewhat upset with the addutide and over promotion if needing help with "Do you want to keep the Cushing's Help message boards?  Do you know that MaryO spends thousands out of her own pocket to keep it running?  Do you want to wake up one day and find it gone?  "

 

No one here is required or even asked to pay anything for the information, help or support they get.  I do ALL the work on these sites at no charge to anyone.  Since the costs are over $1600 more then the donations each year, the "wasted $100" is mine.  I have picked up all the excess charges.

 

 

When in reality  over $1,000 of it seems to be "wasted", and you wouldn't need to pull money out of your pocket to keep it that way.  This year alone donations;

 

Donations: 410.23 USD
Goal Amount: 2906.00 USD

 

In theory just the domain and sever it shouldn't cost more then $300 a year to run this board, so you aren't just wasting *yours*, but donations and resources people are donation for the past several years - and I  am only getting snappy because of your tone, but if you want to get techonical, it has some issues here

 

I have a separate wiki because everyone who is in need of Cushing's information  is not a member of the message boards.

 

 

The wiki can be made public.

 

 

However, I have found another way to combat this and I will be discarding that service when it expires.

 

 

Glad to hear - they are a scam.

 

Many of those URLS you list are blogs on Blogger.com and Wordpress.com

 

 

Correct but the  domain cost money as well as the redirects.

 

They used to be one thread which people wanted split into individual topics so they'd be easier to find.

 

 

Yes -- way to many subforums are clustering and somewhat confusing (I have a short fuse as I am living off a head ache 24/7 with NO releif., but it's soo clustery here that I'm not sure how anyone finds posts).


Edited by NES, 29 June 2014 - 04:20 AM.


#14 philb

 

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Posted 19 July 2014 - 04:01 PM

Thanks NES, so good of you to 'donate'. You've already done more than you should have.



#15 philb

 

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Posted 19 July 2014 - 04:13 PM

This site has literally saved my life and the people that I've met have added greatness to it. I am blessed because of it. The information is available FREE to all and no arm twisting is done to make you donate anything. If you are stressed over posts from others that remind us of the expenses or to give back in support, I think it is your own conscience bothering you.
Don't worry about it. Nobody is judging you over donating or not, disability or mega rich. You do what moves you and nothing more, nothing less. As for cost cutting, saving $$ by doing things differently, well I guess that for whatever reasons, MaryO has settled on this format after 14 years of learning and adapting. So be it. It is not for us to decide what is a waste and what may be a better cost. Don't stress over it.


 



#16 Anka

 

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Posted 20 July 2014 - 02:35 AM

Donation sent-

 

Thank you MaryO, i would have gone crazy without the support of the Cushings website.

 

I have made many friends here who have helped me through the recovery and am forever gratefull!!!

 

 

 

Anka



#17 MCF

 

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Posted 21 July 2014 - 05:26 PM

"Don't get me wrong this is the ONLY cushings forum out on the interent and we have to work with what we got - however, a lot of us ARE disablied by Cushings and can't donate but feel bad and reviewing the list makes us feel bad we can't donate... if the cost was cut down I'm sure we'd be able to help with the goal a lot more."

 

 

 

Darlin, that's why I ALWAYS say, "those who are able" should donate.

And I think it goes without saying that MaryO, by absorbing the expenses we don't cover, demonstrates it every year.
 

Lots of us have been financially compromised by illness or unexpected life circumstances and still need the help, we all know it and understand.



#18 leeza

 

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Posted 03 June 2015 - 06:05 AM

Update. Please donate to this site. Mary O donates alot of her time and her own money just so that we can be given support and advice. Please help in any way you can, no matter how small or how large it all counts and this site supports us all with advice,education etc .Dig in those pockets all you beautiful people because this site needs our help .Love and Hugs xxxx

#19 MaryO

 

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Posted 14 June 2016 - 06:08 PM

I just came back to this older post to get the spreadsheet and some of it really makes me angry again/still/whatever.

 

Grrrrr~

 

Thanks to those who made kind comments. :)







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