Thirteen years ago yesterday (I need to update that image!) I was talking with my dear friend Alice, who ran 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, 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, 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! Daily News Summary at Cushing's Daily News
NEW! cushie.info is now optimized for viewing on PDAs and mobile phones
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.
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.
Here’s to another 13 years…