Happy birthday, Cushing's Help - 15 years old today!

It's unbelievable but the idea for Cushing's Help and Support arrived 15 years ago last night.

I was talking with my dear friend Alice, who ran a wonderful menopause site called Power Surge, wondering why there weren't many support groups online (OR off!) for Cushing's and I wondered if I could start one myself and we decided that I could.

The first website (http://www.cushings-help.com) first went "live" July 21, 2000 and the message boards September 30, 2000. Hopefully, with these sites, I'm going to make some helpful differences in someone else's life!

The message boards are very active and we have weekly online text chats, weekly live interviews, local meetings, email newsletters, a clothing exchange, a Cushing's Awareness Day Forum, podcasts, phone support and much more.

Whenever one of the members of the boards gets into NIH, I try to go to visit them there. Other board members participate in the "Cushie Helper" program where they support others with one-on-one support, doctor/hospital visits, transportation issues and more.

Cushing's Awareness Challenge 2015

The Cushing's Awareness Challenge is almost upon us again!

Do you blog? Want to get started?

Since April 8 is Cushing's Awareness Day, several people got their heads together to create the Fourth Annual Cushing's Awareness Blogging Challenge.

All you have to do is blog about something Cushing's related for the 30 days of April.

There will also be a logo for your blog to show show you've participated.

Please let me know the URL to your blog in the comments area of this post or an email and I will list it on CushieBloggers ( http://cushie-blogger.blogspot.com/)

The more people who participate, the more the word will get out about Cushing's.

Suggested topics - or add your own!

• In what ways have Cushing's made you a better person?
• What have you learned about the medical community since you have become sick?
• If you had one chance to speak to an endocrinologist association meeting, what would you tell them about Cushing's patients?
• What would you tell the friends and family of another Cushing's patient in order to garner more emotional support for your friend? challenge with Cushing's? How have you overcome challenges? Stuff like that.
• I have Cushing's Disease....(personal synopsis)
• How I found out I have Cushing's
• What is Cushing's Disease/Syndrome? (Personal variation, i.e. adrenal or pituitary or ectopic, etc.)
• My challenges with Cushing's
• Overcoming challenges with Cushing's (could include any challenges)
• If I could speak to an endocrinologist organization, I would tell them....
• What would I tell others trying to be diagnosed?
• What would I tell families of those who are sick with Cushing's?
• Treatments I've gone through to try to be cured/treatments I may have to go through to be cured.
• What will happen if I'm not cured?
• I write about my health because…
• 10 Things I Couldn’t Live Without.
• My Dream Day.
• What I learned the hard way
• Miracle Cure. (Write a news-style article on a miracle cure. What’s the cure? How do you get the cure? Be sure to include a disclaimer)
• Health Madlib Poem. Go to : http://languageisavirus.com/cgi-bin/madlibs.pl#.VPGZQlPF9A8 and fill in the parts of speech and the site will generate a poem for you.
• The Things We Forget. Visit http://thingsweforget.blogspot.com/ and make your own version of a short memo reminder. Where would you post it?
• Give yourself, your condition, or your health focus a mascot. Is it a real person? Fictional? Mythical being? Describe them. Bonus points if you provide a visual!
• 5 Challenges & 5 Small Victories.
• The First Time I…
• Make a word cloud or tree with a list of words that come to mind when you think about your blog, health, or interests. Use a thesaurus to make it branch more.
• How much money have you spent on Cushing's, or, How did Cushing's impact your life financially?
• Why do you think Cushing's may not be as rare as doctors believe?
• What is your theory about what causes Cushing's?
• How has Cushing's altered the trajectory of your life? What would you have done? Who would you have been
• What three things has Cushing's stolen from you? What do you miss the most? What can you do in your Cushing's life to still achieve any of those goals?
• What new goals did Cushing's bring to you?
• How do you cope?
• What do you do to improve your quality of life as you fight Cushing's?
• How Cushing's affects children and their families
• Your thoughts...?

Cushing’s Help is 14 Today!

 

Who'd have believed it?  Today, July 21, 2014 is our 14th birthday!

It's unbelievable but the idea for Cushing's Help and Support arrived 14 years ago last night. I was talking with my dear friend Alice, who ran a wonderful menopause site called Power Surge, wondering why there weren't many support groups online (OR off!) for Cushing's and I wondered if I could start one myself and we decided that I could.

The first website (http://www.cushings-help.com) first went "live" July 21, 2000 and the message boards September 30, 2000. Hopefully, with these sites, I'm going to make some helpful differences in someone else's life!

The message boards are very active and we have weekly online text chats, weekly live interviews, local meetings, email newsletters, a clothing exchange, a Cushing's Awareness Day Forum, podcasts, phone support and much more.

Whenever one of the members of the boards gets into NIH, I try to go to visit them there. Other board members participate in the "Cushie Helper" program where they support others with one-on-one support, doctor/hospital visits, transportation issues and more.

Today, We're Twelve!

 

Twelve  years ago yesterday  I was talking with my dear friend Alice, who runs a wonderful menopause site, Power Surge, wondering why there weren't many support groups online (OR off!) for Cushing's and I wondered if I could start one myself.  We decided that I could.

This website (http://www.cushings-help.com) first went "live" July 21, 2000 and the message boards September 30, 2000. Hopefully, with this site, I’ve made  some helpful differences in someone else's life.

Who could have known how this site – now sites – could have grown and grown.

It started as a one-page bit of information about Cushing’s  In people, not dogs, horses, ferrets…

Then, it started growing and growing, taking on a life of its own.  To truly emulate Alice, I added message boards in September.  They were really low-quality, a type put together by an old HTML editor but we had members and actually had discussions.

Not too long after, a real board was opened up and things really started happening.  Then we outgrew that board and ended up in our current home.

The message boards are still very active and we have weekly online text chats, live interviews, local meetings, email newsletters, a clothing exchange, a Cushing's Awareness Day Forum, podcasts, phone support and much more.

Whenever one of the members of the boards gets into NIH, I try to go to visit them there. Other board members participate in the "Cushie Helper" program where they support others with one-on-one support, doctor/hospital visits, transportation issues and more.

Things have changed over the years, though.  The original Cushings-Help site is still updated with new bios, new Helpful Doctor listings, meetings and more but all new articles have moved to a new site - http://www.cushie.info/ – which is much easier to maintain than the older strictly-HTML site.

Also new are a CushieWiki, a site for the Cushing’s Help Organization, several blogs (of which this is one), three Facebook entities (Cushing's Help Cause; Cushing's Help and Support Group; and the Cushings Help Organization, Inc.); a Twitter stream and much more.

New recently:

NEW! Daily News Summary at Cushing's Daily News

NEW! cushie.info is now optimized for viewing on PDAs and mobile phones

NEW!  Medical Centers. These are centers which specialize in Cushing's, pituitary or adrenal patients.  If you, as a patient, have one that you'd like to have added, please send any info you may have to Mary O'Connor (MaryO).  Thank you!

Occasional Newsletters are Back: Members of cushie.info will automatically receive these occasional newsletters. Of course, you may opt-out at any time. Thank you for your interest.  Non-members may subscribe through the Newsletter Subscription module on the left side of this page.

Cushie Toolbar: Be the first to know! The Cushie Toolbar features a Google search box, the 911 Adrenal Crisis! page, the Cushie Reads book recommendations page, Cushie Calendar, all the bios, arranged by diagnosis type or date, add (or update) your bio, our locations around the world, the message boards and chatroom, Helpful Doctors list, add (or update) your Helpful Doctor, support page, scrolling message area for Cushing’s news, Cushing’s blogs, NIH Clinical trials for Cushing’s, pituitary and adrenal, the Cushings Help Organization cause on Facebook, Staticnrg and Cushings on Twitter, new CushieWiki and listen to the Cushing’s podcasts right from this toolbar.

CushieWiki: Please feel free to contribute! The CushieWiki is an ever-changing, ever-growing body of Cushing's knowledge provided by *YOU* and other patients.

Members of the cushie.info site have additional features:

• Your Profile
• Contact Us
• Member List
• How To Add Friends
• Local Liaisons
• Pen Pals
• Add an Article!
• Access the Archives.  News items and abstracts are archived after one month
• Calendar: Add Events
• Calendar: Add a Meeting Venue
• Photos and Images
• Upload Images
• Submit a Link
• Track Health & Fitness Achieve your goals, print charts for your doctors. Add anything else that you would like to track. These are private graphs, available only to you.
• A special menu along the bottom of each page where you can take notes, make changes to your profile, subscribe to RSS feeds and much more.
• Add your Twitter user name and the last 10 "tweets" will show up in your profile for other members to see
• Members can submit links (URLs), send each other PMs, email each other directly, add avatars, add Helpful Doctors and rate current ones or add reviews.  They can also add articles, events and meeting venues. Some articles are available to members only.

We’ve grown out of control from that simple one-page info sheet to way more than I could have ever imagined in that phone conversation with my friend.  I would never have thought that I could do any of this, provide these services and touch the lives of so many others.

I also never thought that I would spend hours a day updating, adding, improving, helping, emailing, phoning, paperwork, writing…

But it’s all worth it if the lives of other Cushies are made better.

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Here’s to another 12 years…

TODAY is the LAST DAY...

...To support Cushing's patients by only clicking a link. Click here to make a difference!

Feel free to share the link around, click more than once, post to Twitter, LinkedIn and Facebook.  Every click is worth $5.00 to Cushing's organizations which support patients.

Thank you for your support!

Support Cushing's ...With A Click.
From Corcept, the makers of Korlym:

Corcept Therapeutics will donate $5 for every person who clicks to support people with Cushing's. Corcept has jump-started the effort to build awareness and support with a $15,000 contribution to provide support through the Cushing's Support and Research Foundation and Cushing's Help.
With your support, we can aim even higher!*
Take part...and spread the word.
*Donations up to $30,000. Program ends April 20, 2012

Click here to make a difference!

Day Ten, Cushing's Awareness Challenge

Blue and Yellow - we have those colors on ribbons, websites, tshirts, Cushing's Awareness Challenge logos and even cars.

This is the yellow PT cruiser I had rented for the Columbus, OH meeting in 2007. It was when we all met at Hoggy's for dinner although some of us travellers stayed at this hotel.

I'm the one in yellow and blue.

 

 

Later in 2007, I bought my own truly Cushie Car.  I even managed to get a butterfly on the tags.

So, where did all this blue and yellow come from, anyway?  The answer is so easy and without any thought that it will amaze you!

In July of 2000, I was talking with my dear friend Alice, who runs a wonderful menopause site, Power Surge, wondering why there weren't many support groups online (OR off!) for Cushing's and I wondered if I could start one myself and we decided that I could. This website (http://www.cushings-help.com) first went "live" July 21, 2000.  It was a one-page bit of information about Cushing's.  Nothing fancy.

I didn't know much about HTML (yet!) but I knew a little from what Alice had taught me and I used on my music studio site.  I didn't want to put as much work <COUGH!> into the Cushing's site as I had on the music studio site so I used a WYSIWYG web editor called Microsoft FrontPage.

One of their standard templates was - you guessed it! - blue and yellow.

TaDa!  Instant Cushie color scheme forever.  Turns out that the HTML that this software churned out was really awful and had to be entirely redone as the site grew.  But the colors stuck.

It's Cushing's Awareness Day! Help Cushing's Help at No Cost to You

 

Support Cushing's ...With A Click.

From Corcept, the makers of Korlym:

They say: "Corcept Therapeutics will donate $5 for every person who clicks to support people with Cushing's. Corcept has jump-started the effort to build awareness and support with a $15,000 contribution to provide support through the Cushing's Support and Research Foundation and Cushing's Help.

With your support, we can aim even higher!*

Take part...and spread the word.

*Donations up to $30,000. Program ends April 20, 2012"

Click here to make a difference!

 

A Simple Mouse Click to Help Support Cushing's Awareness Day!

Support Cushing's ...With A Click.

From Corcept, the makers of Korlym:

They say: "Corcept Therapeutics will donate $5 for every person who clicks to support people with Cushing's. Corcept has jump-started the effort to build awareness and support with a $15,000 contribution to provide support through the Cushing's Support and Research Foundation and Cushing's Help. With your support, we can aim even higher!*

Take part...and spread the word.

*Donations up to $30,000. Program ends April 20, 2012"

Click here to make a difference!

The Cushie.info Blog got a Top Cushings Syndrome blog award!

Read the blog here

RegisteredNurse.org

Cushings Help is 11 Years Old Today!

 

It's unbelievable but the idea for Cushing's Help and Support arrived 11 years ago tonight. I was talking with my dear friend Alice, who runs a wonderful menopause site called Power Surge, wondering why there weren't many support groups online (OR off!) for Cushing's and I wondered if I could start one myself and we decided that I could.

The first website (http://www.cushings-help.com) first went "live" July 21, 2000 and the message boards September 30, 2000. Hopefully, with these sites, I'm going to make some helpful differences in someone else's life!

The message boards are very active and we have weekly online text chats, weekly live interviews, local meetings, email newsletters, a clothing exchange, a Cushing's Awareness Day Forum, podcasts, Wiki, phone support and much more.

Whenever one of the members of the boards gets into NIH, I try to go to visit them there. Other board members participate in the "Cushie Helper" program where they support others with one-on-one support, doctor/hospital visits, transportation issues and more.