Fourth Annual Cushing’s Awareness Challenge

awareness

 

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 Awareness Challenge, Day Eight

It’s Here!

 

Dr. Cushing was born in Cleveland Ohio. The fourth generation in his family to become a physician, he showed great promise at Harvard Medical School and in his residency at Johns Hopkins Hospital (1896 to 1900), where he learned cerebral surgery under William S. Halsted

After studying a year in Europe, he introduced the blood pressure sphygmomanometer to the U.S.A. He began a surgical practice in Baltimore while teaching at Johns Hopkins Hospital (1901 to 1911), and gained a national reputation for operations such as the removal of brain tumors. From 1912 until 1932 he was a professor of surgery at Harvard Medical School and surgeon in chief at Peter Bent Brigham Hospital in Boston, with time off during World War I to perform surgery for the U.S. forces in France; out of this experience came his major paper on wartime brain injuries (1918). In addition to his pioneering work in performing and teaching brain surgery, he was the reigning expert on the pituitary gland since his 1912 publication on the subject; later he discovered the condition of the pituitary now known as “Cushing’s disease“.

Read more about Dr. Cushing

Today, April 8th, is Cushing’s Awareness Day. Please wear your Cushing’s ribbons, t-shirts, awareness bracelets or Cushing’s colors (blue and yellow) and hand out Robin’s wonderful Awareness Cards to get a discussion going with anyone who will listen.

And don’t just raise awareness on April 8.  Any day is a good day to raise awareness.

 

robin-harvey

 

 

MaryO

Know Your Number

English: "Dr. Harvey Cushing," oil o...

English: “Dr. Harvey Cushing,” oil on canvas, by the American artist Edmund Tarbell. Courtesy of the Dittrick Medical History Center. (Photo credit: Wikipedia)

From my email:

As an advocate for patients with Cushing’s disease and their supporters, you certainly understand the importance of continually monitoring cortisol.

April 8th marks Cushing’s Awareness Day and the birthday of Dr. Harvey Cushing, who first described the disease in 1912. We want to use the month of April to bring attention to this disease. In honor of this day, Novartis Pharmaceuticals Corporation is kicking off “Know Your Number,” an important new program emphasizing the importance of cortisol regulation.

Being an advocate for those with Cushing’s disease and for those who care for them, you know that even after a successful pituitary surgery, where cortisol levels return to normal, there is still up to a 35% risk the pituitary tumor could begin to grow again, thus causing hypercortisolism. This potential rise in cortisol is also true for patients who are currently taking medication to control their Cushing’s disease. Over time, this control may begin to diminish. These important facts make it essential that your members are aware of the need to monitor their cortisol level.

Novartis Pharmaceuticals Corporation is initiating an important new program, and we would like to partner with Cushing’s Help and Support to bring this information to your membership and to all patients with Cushing’s disease. “Know Your Number” reminds both endocrinologists and patients that hypercortisolism can have devastating consequences on a patient’s body and emotions. “Know Your Number” promotes follow-up cortisol testing to help identify those patients whose cortisol levels have increased.

Please reach out to your membership with this message during the month of April as we celebrate Dr. Harvey Cushing’s birthday.

To learn more about this program and Cushing’s disease, and to download a discussion guide, please visit www.CushingsDisease.com

Know Your Number.

Cushing’s Awareness Day, 2013

awareness2013

 

 

 

Today, April 8th, is Cushing’s Awareness Day. Please wear your Cushing’s ribbons, t-shirts, awareness bracelets or Cushing’s colors (blue and yellow) and hand out Robin’s wonderful Awareness Cards to get a discussion going with anyone who will listen.

And don’t just raise awareness on April 8.  Any day is a good day to raise awareness.

 

What Can *YOU* Do to help?

Check out these ideas

1) status of the Cushing’s Awareness Day legislation… who has signed, who do we need to get? I have contacts to the US congressfolks from Houston, and I wanted to get them to sign if they have not. Can we get someone to testify before Congress? Can we get any federal funding? Can we rally with other rare disease groups to get in front of that mic on CSPAN?

2) can we do a fund drive for the month prior to April 8th in order to fund all of our projects and this site? can we keep track of how much each board member raises with little thermometers that show how much is collected, in order to get people excited about how much money is being generated?

3) can those who have had surgery in the past year right up there story to be published on April 8th for awareness day? I hope that planning this far in advance will allow us to get more articles published. Perhaps those who already had surgery can ask the paper to re-run their story with an update and reminder about awareness day.

4) can someone can write a press release to the news channels to get coverage for awareness day

5) we get someone to create a very nice postcard that we all can print from our home at our expense on card stock. Then we each pay for the postage to send the cards to all of our friends and families. Perhaps we can ask our family and friends to donate money to us that we can then donate to this board…

6) I need a Cushing’s bumper sticker! I know there are some for sale on the store site, but I was wondering if we can get some heads on this project to get something really catchy. I would put one on my card if we could get a really cool design going… any graphic artists wanna take this up?

7) I love the radio blog shows. I think they are so great. Perhaps we can add that icon to all of our Myspace, Facebook, and personal websites. Do we have an icon that we can post to get people to this site?

8) Have people set up care pages to keep friends and family informed about all the tests, doctors appts and then following us through surgery and post op. I have over 65 people subscribing to my care page, and I am confident that those 65 people didn’t know anything about Cushing’s until I told them about it. If we inform little circles of 50 all around the US and world, then we will be doing a great job increasing awareness. It is free, and I love mine. I control the tone of the site, and no one talks back to me there!

9). What can we do in the medical community? I’d like to see us patients doing more to lead the doctors down the proper path. —– Do we get a booth at a national endocrinologist conference and pass out information we want them to know, with Cushies staffing the booth? —– Do we develop a pamphlet specifically for doctors? —– Do we start a partnership with the national association of endocrinologists (not sure if this really exists, but you know what I mean) and work together to get more research done on Cyclic Cushing’s by offering ourselves up as research participants?

10) Perhaps we contact every Women’s health magazine on the market and submit some articles in February for consideration of their April magazine.

11) Perhaps we buy the google ads based on key words that appears in email. The links pop up on the right side bar while people read their gmail or other online email. If the person says ponch, fat, or other key words, then the side bar will give a link to this site.

12) We can distribute DVDs of Kate’s show and the two mystery diagnosis shows (Sam and Sharmyn) to doctors and endos? To new Cushies? This will take some money for DVDs and postage, but if we focus on raising some money, then we can allocated funds to these worthwhile expenses. Now, I am not sure if we need permission from Mystery Diagnosis or Nat Geo for that, but someone can take this project and get all the details.

 

I’d like to see us set up a goal-driven campaign for Cushing’s Awareness Day. This will really help motivate us into seeing how much interest and good we are generating as a group.

# of newspaper articles submitted
# of newspaper articles publised
# of magazine articles submitted
# of magazine articles published
# of dollars raised
# of dollars allocated to outreach (keyword ads in gmail and others, etc)
# of carepages set up
# of care page followers (in friends and family.. I have 65 already) etc.

If we each decide to lead a project to get all of this taken care of, we could be in a very good position to launch a really big Cushing’s Day Awareness in April. I am really looking forward to seeing all the creativity that exists of the minds of my brilliant Cushie friends!

This year, Novatis has made 2 TV commercials that will air this month to help with Cushing’s Awareness.

View them in advance here:

And

Also, a bit late for Cushing’s Awareness Day this year but a big hope for the future is the upcoming Congressional Caucus on Rare Diseases:

April 16th Rare Disease Congressional Caucus Briefing

 

RDCC-Horizontal-CMYK

Rare Disease Legislative Advocates and Novartis, in coordination with Rare Disease Caucus Co-Chairs Representatives Leonard Lance (R-NJ) and Joe Crowley (D-NY)  will host a briefing on “Medical Innovation for Rare Diseases: Challenges that Our Country Must Address.”  Tuesday, April 16, 2013 from 12:00 PM – 1:00 PM in Rayburn B-318

 

Discussion:

  • Advancements and new developments in the treatment of rare diseases
  • Advances in the rare pituitary disease space
  • Opportunities and challenges for those living with a rare disease
  • Opportunities to discover new treatment options

Speakers  include:   

  • Robert Knutzen – Pituitary Network Association; Chairman and CEO
  • Louis Pace – Cushing’s Support and Research Foundation; President
  • Dr. Vijay Iyengar – Novartis Rare Disease Franchise; Vice President

Food and Refreshments will be served.

General Public may RSVP by clicking here

Staffers may RSVP by contacting Helen Dwight in the office of Rep. Leonard Lance (202-225-5361) or Nicole Cohen in the office of Rep. Joe Crowley (202-225-3965).

Cushing’s Awareness Blogging Challenge 2013

Do you blog? Want to get started?

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

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

Robin designed this year’s version of our “official logo” to put on your blogs.

Cushing's Awareness Challenge 2013

challenge-2013nb

If your blog wants you to upload an image from your desktop, right-click on the image above and choose “save-as”. Remember where you saved it to!

To link to the image with the yellow border, use this URL: http://www.cushings-help.com/images/challenge-2013b.jpg

To link to the image without a border, use this URL: http://www.cushings-help.com/images/challenge-2013nb.jpg

In all cases, the URL for the site is http://www.cushings-help.com

Please let me know the URL to your blog in the comments area of this post or 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?Challenges 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 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?
Your thoughts…?

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