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It's About Time There Was Some Support for Cushing's!
Ten Years of Support! PDF Print E-mail
Written by MaryO   
Tuesday, 20 July 2010 10:13

 

Ten 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:

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 10 years…

Last Updated on Tuesday, 20 July 2010 10:18
 
Cushing's Awareness Day, April 8 PDF Print E-mail
Written by MaryO   
Thursday, 08 April 2010 11:46

 

What Can *YOU* Do to help?

Check out these ideas

Last Updated on Thursday, 08 April 2010 11:48
Read more...
 
It's Cushing's Awareness Day: Cushing's Help Newsletter, April 8, 2010 PDF Print E-mail
Written by MaryO   
Thursday, 08 April 2010 11:39
It's Cushing's Awareness Day: Cushing's Help Newsletter, April 8, 2010
This email newsletter contains graphics.
If you don't see them, view it in your browser.

Medical: Abstracts and News

Modulatory Effect of Raloxifene and Estrogen on the Metabolic Action of Growth Hormone in Hypopituitary Women
A technical note on endonasal combined microscopic endoscopic with free head navigation technique of removal of pituitary adenomas
Magnetic Resonance Imaging and Pituitary Function in Children with Panhypopituitarism
Long-term unemployment associated with poorer health
Cushing’s syndrome: Why is diagnosis so difficult?
Effects of Cushing Disease on Bone Mineral Density in a Pediatric Population
Trends in adrenalectomy: a recent national review
Is There Value in Routine Screening for Cushing's Syndrome in Patients with Diabetes?
Primary adrenal hypercortisolism: minimally invasive surgical treatment or medical therapy? A retrospective study with long-term follow-up evaluation

Cushing's Awareness Day, April 8
Dr. Harvey Williams Cushing (1869-1939)

Read More

Cushie News!

A Note from MaryO


Dear , welcome to the latest version of Cushie News!

Today is Cushing's Awareness Day.  We have been celebrating this on the message boards for the last 9 years as members have shared with others about Cushing's.  Please try to do something special today (or every day!) to promote Cushing's Awareness.

Read More

About Us: Meetings, Bios and Helpful Doctors

• UVa Pituitary Days 2010 conference, April 16-17, 2010 in Charlottesville, VA. More info here.

• DC Metro Area Cushie Lunch, April 24 or 25, 2010 in Fredericksburg, VA. More info here.

• Third Annual Seattle Pituitary Symposium: A Patient's Road Map to the World of Pituitary Disorders. May 8, 2010. More info here.

• Magic Foundation Conference, including Cushing's and Growth Hormone Issues, June 11-13, 2010 in Chicago, IL. More info here.

• Endo 2010 (San Diego, CA) June 19-22, 2010. More info here.

• ENDO 2011 (Boston, MA) June 4 - 7, 2011. More info here.

• Cushie Convention 2011 (Winnipeg, MB, Canada, or St. Louis, MO, USA) November 18, 2011 to November 20, 2011. More info here.

• ENDO 2012 (Houston, TX) June 23 - 26, 2012. More info as it becomes available.

• ENDO 2013 (San Francisco, CA) June 15 - 18, 2013. More info as it becomes available.

• ENDO 2014 (Chicago, IL) June 21 - 24, 2014. More info as it becomes available.

• ENDO 2015 (San Diego, CA) June 20 - 23, 2015. More info as it becomes available.

• ENDO 2016 (Boston, MA) June 4 - 7, 2016. More info as it becomes available.

• Discussions about other upcoming meetings on the message boards: Meetings, events and information.

Updated: Peter J. Snyder, M.D., (Philadelphia, PA)

Fiona J Cook, M.D. (Greenville, NC)

Dr Farheen Yousuf (Austin, TX)

Lisa Nachtigall, MD (Boston, MA)

Anthony Heaney, M.D. (Los Angeles, CA)

Marvin Bergsneider, M.D. (Los Angeles, CA)

New and Updated Medical Centers:

Pennsylvania: Penn Pituitary Center


Maryland: Johns Hopkins Pituitary Tumor Center


Washington: Seattle Pituitary Center at the Swedish Neuroscience Institute


New Bio April 2, 2010
Brandi (femnn1)
is from St. Louis, Missouri. She is not yet diagnosed with Cushing's but has several symptoms and is testing.

New Bio April 1, 2010
Rosie (Rosie H.)
is from Orland Park, Illinois. She is not yet diagnosed with Cushing's but has several symptoms and is testing.

New Bio March 30, 2010
AnnaG
is from Crestview, Florida. She was diagnosed with Cushing's several years ago and had a pituitary tumor removed in March, 2003. Repeat tests along with a couple others show her Cushing's is back.

New Bio March 29, 2010
Emily (McHan)
is from Sale City, Georgia. She is not yet diagnosed with Cushing's but has several symptoms and is testing.

New Bio March 29, 2010
saria433 (saria433)
is from Trois-Rivieres, Quebec, Canada. She is not yet diagnosed with Cushing's but has several symptoms and is testing.

New Bio March 28, 2010
Derek (MrDerek)
is from Essex Junction, Vermont. He is suffering from secondary hypogonadism and will be having a pituitary MRI soon.

New Bio March 25, 2010
Cynthia
is from Nampa, Idaho. She had adrenal surgery in 2007.

New Bio March 25, 2010
Samantha (Sammyegail)
is from Chattanooga, Tennessee. She is not yet diagnosed with Cushing's but has several symptoms and is testing. She has an adrenal gland disorder, severely underactive, underactive thyroid and severe migraines.

New Bio March 22, 2010
Stephanie (Steph1323)
is from Cape Coral, Florida. She is not yet diagnosed with Cushing's but has several symptoms and is testing. She had thyroid tests done as well and those show perfect results, too.

New Bio March 12, 2010
Dwight (Rocky)
is from Rocky Mountain House, Alberta, Canada. He had a BLA in May of 2008 because of ectopic Cushing's disease. His recovery was good with most symptoms decreasing or continuing to improve but he still has no energy, extreme fatigue and depression.

New Bio March 10, 2010
Martha
is from San Francisco, California. She was diagnosed two years ago with Cushing's Disease. She has had two unsuccessful pit surgeries and has taken part in a drug study that was also unsuccessful. Right now she's deciding whether to get a third pit surgery or have a BLA.

New Bio March 5, 2010
Melissa R (melissar)
is from Chelsea, Oklahoma. She was diagnosed with pituitary dependent Cushing's disease in May of 1996 when she was 17. Since then she has had 2 pituitary surgeries, thirty radiation treatments, three attempts at a bilateral adrenalectomy with only one adrenal being removed.

New Bio March 4, 2010
Rita (sparkie)
is from Lafayette, Indiana. Her neuro diagnosed Cushing's Syndrome right away but she's not sure her endo will be so easily convinced.

Contact Us Contact MaryO
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Last Updated on Thursday, 08 April 2010 11:45
 
Robin Smith (staticnrg) submitted 'Paying It Forward in the Digital Age: Patient Empowerment 2.0 Using Web 2.0' PDF Print E-mail
Written by MaryO   
Monday, 22 June 2009 10:06

Robin (staticnrg) submitted an abstract to Medicine 2.0Medicine 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'

An online community is usually defined by one or two things. These come from blogs, websites, forums, newsletters, and more. The emphasis is typically either totally support or education. But sometimes all of these meet. The Cushing’s community, bonded by the lack of education in the medical community and the necessity or self-education has become a community of all of these things.

Mary O’Connor, the founder and owner of the Cushings’ Help website and message boards started with one goal in mind. She wanted to educate others about the awful disease that took doctors years to diagnose and treat in her life. Armed only with information garned from her public library and a magazine article, she self-diagnosed in the days prior to the availability of the internet.

Mary’s hard work and dream have paid off. Others, with the same illness, the same frustrations, and the same non-diagnosis/treatment have been led by MaryO (as she’s lovingly called) to work with her to support, educate, and share.

The Cushing’s Help website soon led to a simple message board which then led to a larger one, and a larger. The site has numerous helpful webpages chock full of information. The members of this community have made a decision to increase awareness of the disease, the research that is ongoing with the disease, the doctors who understand it, and the lack of information about it in the medical field.

From this hub have come multiple Web 2.0 spokes. Many members have blogs, there is a non-profit corporation to continue the programs, a BlogTalkRadio show with shows almost every week, thousands of listeners to podcasts produced from the shows, twitter groups, facebook groups, twines, friendfeeds, newsletters, websites, chat groups and much, much more. The power of Web 2.0 is exponential, and it is making a huge difference in the lives of patients all over the world. It is Empowerment 2.0.

One patient said it well when she said, “Until this all began I was a hairstylist/soccer mom with a high school education. It’s been a learning curve. I am done with doctors who speak to me as if they know all; I know better now.” And she knows better because she’s part of our community. All patients need this type of community.

On the Message Boards

 
Non-profit Status PDF Print E-mail
Written by MaryO   
Monday, 27 October 2008 13:25

Updated November 29, 2008:

Here's a checklist of what needs to be done.  As items are completed, they will have a strike through them.

We are in Phase II and moving forward.

Last Updated on Saturday, 29 November 2008 12:32
Read more...
 


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Disclaimer: Cushings Help Organization Inc does not engage in the practice of medicine, dispense medical advice or endorse any specific doctors or medical institutions. It is not a medical authority, and does not claim to have medical knowledge. In all cases, Cushings Help Organization Inc recommends that you consult your own qualified medical personnel regarding any course of treatment or medication and for answers to your specific questions.

Our goal is to provide support for Cushing's patients and families; provide the most current information and news about this rare disease; to help provide education about Cushing's and related diseases / syndromes; and to encourage local and national support meetings.