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#450644 The Boards will Be Down for a Few Days

Posted by MaryO on 06 December 2011 - 04:45 PM

This is the same announcement that has been at the top of the boards for a week or so

The Cushings-Help boards will be down for a few days for an upgrade. I'm not doing this upgrade myself, so I can't give an exact date.

For more information, please see this post.

After the upgrade, there will be a learning curve for everyone, so please be patient!


#435814 Dr Ted Friedman will return for his Third Live Voice Interview, Sunday, Febru...

Posted by Jeanie on 14 February 2011 - 12:39 PM

Thank you! Very informative! :)


#435811 Dr Ted Friedman will return for his Third Live Voice Interview, Sunday, Febru...

Posted by MelissaTX on 14 February 2011 - 05:42 AM

I just finished the hour long chat on iTunes. Love love love it!!!! I'm so thankful to all who make it happen. I learned a lot tonight.


#435770 Dr Ted Friedman will return for his Third Live Voice Interview, Sunday, Febru...

Posted by Rissa on 13 February 2011 - 05:50 PM

Great questions.

I would also like to hear the answer to Alicia's questions about the role of Florinef in a post-pituitary patient who is panhypopituitary still 2 years post-op without functioning adrenals.

In a post-pituitary surgery patient with total pituitary removal, for a recurrence, what are the best methods to test for recurrence and what are the benefits/risks of radiation vs. BLA.

Thanks again to Dr.F. for volunteering his time.

Rissa


#435373 New Forum for Photo Albums and TImelines

Posted by MaryO on 05 February 2011 - 05:04 PM

Since lots of people are making these for their doctors, I though it would be good to have a special forum so that these wouldn't get lost deep in the Chit-Chat area.

Find it at http://cushings.invi...p?showforum=311


#247020 Cushing's Awareness Day, April 8, 2008

Posted by MelissaTX on 19 January 2008 - 09:21 PM

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?

Melissa


Here is a link to what is up with the legislation. This will need some attention this year, too. Please go to this post to see my reply there:
Click here to see what's up with the legislation!


#247005 Cushing's Awareness Day, April 8, 2008

Posted by MelissaTX on 19 January 2008 - 07:51 PM

I have been working in politics and grassroots organizing for the last three years. I wanted to apply that mindset to get the word out about Cushing's. I missed last year's April 8 festivities to celebrate Harvey Cushing's birthday.Not knowing what was done before, I thought I would throw out some ideas.

Here is a link to what Gumdrop/Christy found: Cushing's final resting place

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.

Hugs to all,

Melissa