16 Years Old!

Posted on July 21, 2016 by MaryO

happybirthday-2015

It’s unbelievable but the idea for Cushing’s Help and Support arrived 16 years ago last night.  That’s a long time for anything online.

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 making some helpful differences in someone else’s life!

The message boards are very active and we have weekly online text chats, occasional 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.

Of course, we now have a Facebook page and 2 groups.  Both are secret, so if you want to join, please email  or PM me for an invitation.

Other sites in the Cushing’s Help “Family”

 

maryo colorful zebra

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Ready, Set, Go!

Posted on April 1, 2016 by MaryO

Ready-set-write

Read all the blog posts here, on the right side.

It would be great to share some (ALL?) on Twitter, Facebook, wherever to get the word out even further.

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Cushing’s Awareness Challenge Starts Now!

Posted on April 1, 2015 by MaryO

Ready-set-write

Read all the blog posts here, on the right side.

It would be great to share some (ALL?) on Twitter, Facebook, wherever to get the word out even further.

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Someone Asked What I Did For Rare Disease Day…

Posted on February 28, 2015 by MaryO

world-rare-disease-2015

 

My husband and I went to the Rare Disease Day at NIH and told everyone who would listen about Cushing’s.  We passed out a whole box of Cushing’s business cards.

Tweeting/retweeting info about Cushing’s and Rare Disease Day today.

Adding info to one of my blogs about Cushing’s and RDD.

Adding new and Golden Oldies bios to another blog.

Getting the next Cushing’s Awareness Blogging Challenge set up for April.

And updating https://www.facebook.com/CushingsInfo with a bunch of info today (and every day!)

Filed under: Cushing's, Meetings and Conferences, Rare Diseases | Tagged: , , , , , , , | 1 Comment »

Rare Diseases, Loud Voices

Posted on February 28, 2015 by MaryO

world-rare-disease-2015

 

This year, Novartis is adopting the theme, “Rare Diseases, Loud Voices,” is offering content aimed at helping to amplify the voices of patients, families and caregivers impacted by rare diseases including Cushing’s disease. We are providing educational materials and resources highlighting several rare diseases thorough a Rare Disease Day specific microsite on our website (http://www.novartisoncology.com/world-rare-disease-day-2015.jsp) and across our social media channels, including Twitter, YouTube, Facebook, Pinterest, LinkedIn and Instagram.

On the microsite you will see we have also just launched two new resources – a whiteboard animation video (also posted to the Novartis YouTube page) and an infographic (also posted to the Novartis Pinterest page (https://www.pinterest.com/pin/384002305703664913/).

As part of our Twitter activity, several Cushing’s disease-specific tweets have been issued this week, featuring the hashtags #GetLoud, #RDD2015 and #raredisease, as well as complementary visual content to try to help tie Cushing’s disease to the larger RDD discussion.

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