Cushing's Info

I saw this on another site and I stayed up all night making one for Cushies because I thought it was so cool.

This is a toolbar you can install on any browser and it will link to what I think are the most important parts of the Cushing’s websites. If you have other ideas, please let me know.

Right now, this contains (from left to right)

1. The Cushie ribbon icon which takes you to the home page of the newer cushie.info site. Click on the little down arrow to the right of the ribbon and another whole menu appears!
   
   
2. Next to that is a Google search box.
3. An icon for the 911 Adrenal Crisis! page
4. A link to the Cushie Reads book recommendations page on amazon.com
5. The Cushie Calendar
6. All the bios, arranged by diagnosis type
7. Add (or update) your bio
8. Our locations around the world
9. The message boards and chatroom
10. Helpful Doctors list
11. Add (or update) your Helpful Doctor
12. The Support page where people can make donations to help keep all these websites going.
13. A little scrolling message area for Cushing’s news.
14. Cushing’s blogs. I’m still working on this – and I’m not sure how many I can add but for the moment, this blog is included as well as Cushie Bloggers and survive the journey
    
    When any of these update, the icon changes to show that there are new posts.
    
    This area now includes NIH Clinical trials for Cushing’s, pituitary and adrenal. Be the first to know when new trials are listed.
15. The Cushings Help Organization cause on Facebook
16. Links to Staticnrg and Cushings on Twitter. Again, more can be added. If you talk mostly about Cushing’s on Twitter, please let me know.
17. The new CushieWiki. BTW, please feel free to sign up and become a contributor/editor.
18. A radio button – you can play the Cushing’s podcasts right from this toolbar. You can also add stations that you’d like to listen to.
19. You can also add other modules like games, weather, email, hundreds of different things.

Download this toolbar or see a sample.

Eric Fiedler, founder and co-leader of the Baltimore/D.C. Addison's Support Group, is conducting a survey of adrenal insufficient (Addison's disease and secondary adrenal insufficiency) patients.

Eric is a senior at Johns Hopkins University in Baltimore, Maryland, working toward degrees in neuroscience. This survey is being used as Eric's Undergraduate Research Project. He has the backing of Johns Hopkins University and is conducting the survey under the supervision of Dr. Roberto Salvatori.

Dr. Salvatori is an endocrinologist at Johns Hopkins University who specializes in adrenal and pituitary diseases. He also is one of the foremost researchers in adrenal disease as well as control of growth hormone secretion, genetic causes of growth hormone deficiency, consequences of growth hormone deficiency.

Access Eric's survey here "Qualitative Study on Cushingoid Syndrome Associated with Corticosteroid Replacement Therapy" or on the NADF Website (www.nadf.us).

The survey should be completed by patients who have adrenal insufficiency, with the exclusion of those who have adrenal insufficiency due to adrenoleukodystrophy, adrenomyeloneuropathy, congenital adrenal hyperplasia (all types) and/or AIDS.

Thank you so much for your participation!

We always need people to act as local liasons, setting up meetings, contacting new people, just being there for other Cushies.

If you would like to be a Local Liason for your area, please contact Mary O'Connor (MaryO) with your area, type of Cushing's, name on the message boards (if any) and any other info that others might find helpful such as a link to your blog or bio or doctor name.

Thanks for offering to help!

Robin (staticnrg) submitted an abstract to Medicine 2.0.  Medicine 2.0 is the annual open, international conference on Web 2.0 applications in health and medicine, also known as the World Congress on Social Networking and Web 2.0 Applications in Medicine, Health, Health Care, and Biomedical Research.

This conference distinguishes itself from "Health 2.0" tradeshows by having an academic form and focus, with an open call for presentations, published proceedings and peer-reviewed abstracts (although there is also a non-peer reviewed practice and business track), and being the only conference in this field which has a global perspective and an international audience (last year there were participants from 18 countries).

An academic approach to the topic also means that we aim to look "beyond the health 2.0 hype", trying to identify the evidence on what works and what doesn't, and have open and honest discussions.

This year's conference will be held in Toronto, Canada and will be attended by

• Academics (health professionals, social scientists, computer scientists, engineers)
• Software and Web 2.0 application developers
• Consultants, vendors, venture capitalists, business leaders, CIOs
• End-users (health professionals, consumers, payors)

Robin's abstract was submitted and accepted!  WooHoo!

'Paying It Forward in the Digital Age: Patient Empowerment 2.0 Using Web 2.0'