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Home  Spread the Word
Spread the Word
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Ask your Member of Congress to join the Rare Disease Congressional Caucus |
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Thursday, 09 May 2013 19:23 |
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The Deadline is Friday for Helping Grow the Rare Disease Congressional Caucus.
Help us strengthen the rare disease community's voice on Capitol Hill! Please take 3 minutes to ask your Member of Congress to join the Rare Disease Caucus at http://bit.ly/RareAlert.
It's easy - the Action Center has a draft letter that will automatically be sent to your Member of Congress - just put in your name and address & click send. We also encourage you to personalize the letter to share information about your specific disease. If your Congress Member is already on the Caucus, the letter will automatically populate as a thank you letter instead - these are just as important to send!
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Last Updated ( Friday, 17 May 2013 19:01 )
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Cushing's on TV ~ The Balancing Act |
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Tuesday, 23 April 2013 09:21 |
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From my email:
We haven’t personally spoken for a while, but I wanted to share one of our recent efforts to increase awareness about Cushing’s.
To help spread the word about Cushing’s syndrome, we [Corcept Theraputics, makers of Korlym] coordinated with Lifetime TV to develop a short segment about Cushing’s syndrome. We were able to supply 2 guests to help bring the disease to life. Sara Cook, a patient with Cushing’s disease shares her personal story and her success with a medicine that blocks the activity of excess cortisol and Dr. James Findling shares his personal medical expertise.
The Balancing Act segment will air tomorrow April 23 [note: it's showing several other times, as well. Check your listings!] on Lifetime TV at 7:00 am EST and 7:00 am PST. After it airs, the episode will also be available on the Balancing Act website, www.thebalancingact.com .
You can see the promotional segment at the following link: http://www.thebalancingact.com
/story/4092/cushings_syndrome . The segment will initially be seen by the daily 500,000 mostly female audience… helping to spread the word about Cushing’s. It will get further viewership online and through online linking.
We were hoping to have the segment air on Cushing’s Awareness Day, but they weren’t able to accommodate, so we got as close as we could.
In addition to the audience viewership, we hope this segment helps demonstrate our support and commitment to the Cushing’s community.
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H. CON. RES. 31 Supporting Rare Pituitary Disease Awareness |
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Thursday, 18 April 2013 10:40 |
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Write to your senators and congresspeople to get this passed.
Track this resolution through the Committee, House and Senate.
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Last Updated ( Tuesday, 23 April 2013 10:17 )
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Cushing's Awareness Blogging Challenge 2013 |
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Thursday, 14 March 2013 06:04 |
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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.
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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Share Your Cushing's Story on TV |
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Tuesday, 06 November 2012 21:19 |
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A new series on Lifetime TV's daily morning talk show, The Balancing Act is featuring Cushings Syndrome.
Producers are looking for patients to share their stories in the comments of their landing page for Unveiling the Mystery: Rare and Genetic Diseases!
http://www.thebalancingact.com/rare/
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" I am happy to see a place here where I may be able to connect with people that actually understand how ugly this disease is. I have often felt alone . "
Vanessa B
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