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Cushing's Awareness Day, April 8


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#1 MaryO

 

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Posted 08 April 2010 - 04:57 AM

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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!

So, please, if you could take moment to add suggestions and brain storm here. The list I came up with is right off the time of my head, as I have no knowledge of what's been done before. Please take the list as simple suggestions in an effort to see how many 'stick' and how many we can tweak to produce a great product.

* Sign Amber's Petition. www.ipetitions.com/petition/CushingsDiseaseAwareness

Amber writes:

Thought I would explain what this petition can do....
o First of all, it adds power and substance to our efforts to have a Nationally recognized day if we have an extensive, following.
o Second, this petition and all the signatures can be printed and sent to a Senator, politician, or medical professional that may be will to take on the cause.
o Third, this petition and its list of signatures are IDEAL for releasing to the press and media for coverage and will assist GREATLY in getting the word out there.

It is so simple. The petition has a place to add your name and a comment if you want. PLEASE take a moment to sign and formward it on to all the people in your address book, your friends and family.

We all get forwarded messages all the time, but this one is dear to our hearts and can make a differnce! WHATS STOPPING YOU!?

PLEASE SUPPORT OUT EFFORTS TO RAISE AWARENESS! YOUR HELP IS NEEDED AND IT IS SO EASY!

* CherylF, CUSH Vice President suggests:

I contacted Senator Inhofe's (OK) office recently, and he is happy to reintroduce the Cushings Awareness Day Resolution for April 8, 2007.

Please contact your US Senator's office and ask them to support this Resolution. I'm not sure when Senator Inhofe will try and contact other senators but if you send a letter soon, and call your senator to let him know your letter is coming, and that Senator Inhofe is going to reintroduce the Resolution, it will truly help.

Last year the Resolution was introduced, but to my understanding, only one senator-another from Oklahoma was the only one to contact Senator Inhofe's (Okla) office to co-sponsor the Resolution.

If you send a letter requesting it, you might also request that a reply be sent back to you . Please try to send the letter in the next two weeks if possible.

Last year we had a small Conference in OKC celebrating the passing of the Resolution, and there is some information on that conference on the CUSH website (cushings-help.com) , and I believe on this one as well. We won't be having a specific conference in OKC, but ask that you bring awareness in your own states, communities as you can. Last year a TV station in OKC aired a small segment about the conference & Cushings Awareness Day, as did one in Nebraska- with Autumn as the contact person.

As the OK CUSH rep as well, I might have something for those around the OK area, a small get together if anyone is interested...more like a dinner or luncheon so we can visit each other. You can always contact me for more info if you'd like...together we can make a difference!

cheryl1957ann@sbcglobal.net
Thank you in advance, Cheryl Farrar- CUSH Vice President

* Contact your Senator Print out a sample letter to send to your congress person or senator or download it in Word format.

More information here
* Follow Jayne's Lead. She writes:

Of course, I'll be supporting the day and writing letters and emails and making phone calls. I hope to find us a celebrity ribbon wearer.

Something else I am working on is national TV recognition with the major networks and National publications. You can email them as well on their "contact us" info. Contact the hosts of the show and the producers to mention April 8th and Cushing's Awareness.

I am going to find out information on getting money (grant) to publish magazine adds/articles for the April editions, if not this year then for next year. I know they are probably being printed, but I just thought of this idea. My local paper will run a small 2x3 ad for starting at $300. I want the whole page! I thought about having a yard sale to raise money to put in an ad, but doubt that I'd make enough. Oh Well!

Something else I thought about is getting a chain pharmacy to post cushings info for that week prior to the 8th. Medical school journal/papers can also be contacted. I know I must have emails over 100 doctors last year on the 7th (once I know that it had passed). I'll be setting up a booth at the women's Forum again this year. I hope to set up at some health expo's and at the local Hospital or at least make/pass out flyers.

* Wear Cushing's Bracelets or T-Shirts to promote Cushing's Awareness. Cushing's Awareness T-Shirts and other products are available here: Cushie GiftStore.
* Post your ideas and what you have done here: http://cushings.invi...showtopic=19173

In 2007: Inhofe Designates ‘National Cushing’s Syndrome Awareness Day'

#2 happy41

 

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Posted 08 April 2010 - 12:58 PM

Mary, thank you for all that you do for Cushings!

It appears to me that we DO have federal funding for Cushings research -- and, for a rare disease, pretty substantial funding -- about $2 million a year. Or about $1000 per person who is diagnosed with Cushings in the US each year.

It is spent supporting Dr. Neiman at NIH and her staff. I suspect that a substantial amount of it is spent for Dr. Neiman to travel to conferences and provide educational talks to other endocrines and to pay for the endocrine fellows in their clinic.

If people think there are other, higher priorities, they need to contact the head of NIH and ask. His email address is francis.collins@nih.gov. He is the geneticist who found the gene that causes MEN I. So he should know what cushing's is.

Items that I think should be a priority would be:

1. Funding to allow Dr. L and Dr. F to compile and publish the results of their research on what tests work well for diagnosing cyclic cushings and what tests do not work as well. I would bet that $100k each would be more than enough to each would allow them to hire a full time researcher to analyze the data and get a publishable article put together.
2. Funding to characterize the hyperplasia that cyclics seem to have both with respect to the pituitary and adrenal glands. There is research going on in Europe that hypothesizes that it is caused by deficiencies in dopamine, which would dovetail well with the use of cabergoline for some cushing's patients. MDA, Swedish and Elmbrook undoubtedly have enough pathology samples from us to provide a pathologist with plenty of "stuff" to work with. I bet a year's worth of a full time pathologist in a government funded situation and support would not cost more than $300k.
3. Genetic testing with family groups in order to identify the gene that causes cyclic cushings -- since it seems to have a high incidence of multiple family members who are affected. I have less of an idea of what that would cost, but it did not take hundreds of families to find the gene for MEN I. I suspect that we have enough families for such a study just with the people who participate on this board.

In short, I think that if we gave up the "training" funding and put it into research for a couple years, the trainers would have something far more useful to be talking about and training new endos in.

#3 MaryO

 

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Posted 08 April 2013 - 02:21 PM

Here are  two short videos Novartis created to promote Cushing’s disease awareness and to support Cushing’s Awareness Day in the U.S. and around the globe. 
 
Straight Talk Cushing’s ( http://bit.ly/YyrCN8 )
 
Living with Cushing’s Disease ( http://bit.ly/XZYhYr )


#4 BDen13

 

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Posted 08 April 2013 - 10:41 PM

As sad as it is, the fact that big pharma now has something at stake in treating cushing's, there will be a lot more made into increasing awareness and getting doctors more information on properly diagnosing cushing's even in difficult cases than patient advocates could have ever done on their own.

 

My endo is doing about 1-2 speeches on cushing's every month to various conferences, all funded by Corcept and Novartis.



#5 MaidM

 

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Posted 09 April 2013 - 01:38 AM

Interesting that they say Cushings is not curable. That's not what my doctor told me! LM

#6 djphelyne

 

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Posted 09 April 2013 - 02:30 AM

I would like to see someone come up with an at home journal/workbook where it makes it much easier for people to chart their symptoms and lab results. I'm sort of already working on it.

It will help people get to a diagnosis faster, make it less overwhelming to collect data for the patient, and hepofully be displayed in such a way that drs would be less able to ignore patients. It would also serve as a way to collect more statistical data that could be used in addition to the trails and research going on.

I'm analytical, when I'm thinking clear. I'm also a recording engineer and have worked in tv/movies and as a dj. Id love to see more videos and documentaries be made and would be more then happy to help, even if it turns out I do not have cushings. Even if I don't, my sis did have Conn's. Local artists could do fundrasing events. These are things I could help with when I'm well enough. Unfortunately, right now I'm unable to work because each day is so hit or miss. But on my good days I'm working on the above things. I'm just not making quick progress.

#7 MaryO

 

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Posted 09 April 2013 - 02:52 AM

Djphelyn, there's an excel spreadsheet at http://www.cushings-...ngs-journal.xls  I haven't looked at it for a while so it may need some updating, though.



#8 djphelyne

 

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Posted 09 April 2013 - 03:48 AM

Thanks. { :

#9 djphelyne

 

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Posted 09 April 2013 - 04:37 AM

http://foundationcen...raining/online/

I found this site a while ago and thought it might have useful info for those working so hard on cushings awareness.

#10 MaryO

 

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Posted 18 April 2013 - 04:11 PM

BDen, at least someone is interested in raising awareness for Cushing's, pharma or not.

 

There is currently a resolution in Congress  ~ House Resolution: H. CON. RES. 31 Supporting Rare Pituitary Disease Awareness  Contact your senators and congresspeople to get this passed.



#11 MaryO

 

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Posted 20 April 2013 - 08:50 PM

http://foundationcen...raining/online/

I found this site a while ago and thought it might have useful info for those working so hard on cushings awareness.

 

Thanks, djphelyne.  I'll check it out!



#12 MaryO

 

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Posted 08 April 2014 - 02:24 PM

It’s Here!

awareness.gif

 

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.jpg

 

 






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