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MelissaTX

Cushing's Awareness Day, April 8, 2008

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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

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Hey there! I just wanted to say that you have come up with some really great ideas!! Unfortunately my brain is on vacation right now so I don't have anything to contribute, but I will keep trying. I also wanted to say that I will do anything to help! I *used* to be rather creative and *used* to write well, but I fear those talents are some of the many things that Cushing's has stolen from me. Give me a task and I'll do my best! :spudnikbigthumbsup:

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How about publishing a small Cushie Joke Book, get a publisher involved and take a rake off for the Support Board Funds.

 

Dave

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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!

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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?

 

 

 

Here's an idea from MaryO's list of other ways to contribute to our cause:

 

 

Ways to Give Back... in no particular order:

 

Endocrine Society News - Cushing's as Cover Story! Mail to ENLetters@endo-society.org to send a letter to the editor. Some will be published and the doctors (endos!) who read this will get the patient's eye view.

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WELL I READ YOUR POST BEFORE I TOOK A SHOWER AND WHILE I WAS IN THERE I GOT TO THINKING. AND WAS WONDERING IF ANYONE HAS THOUGHT ABOUT STARTING ONE OF THOSE EMAIL FORWARDING THINGS. SOME ONE WITH THE CREATIVITY AND COMPUTER SMARTS COULD DESIGN A COOL EMAIL THAT WE COULD FORWARD TO EVERYONE THAT WE KNOW AND THEY COULD DO THE SAME. THEY SAY THAT THERE IS SIX DEGREES OF SEPARATION BETWEEN PEOPLE SO WHO KNOWS WHO ALL WOULD GET TO SEE IT. IT COULD HAVE SOME PICTURES OF US AND HOW MUCH IT'S CHANGED US ALONG WITH SOME INFO AND THEM SOME TESTIMONIALS FROM US.

 

I DON'T KNOW JUST A THOUGHT.

 

~MELINDA~

 

**WHAT ALL DO YOU THINK?**

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Melissa,

 

i have done a medical segment here in Pgh.........i could do another one Im almost certain.

 

i know the Supreme Court Judge of Pennsylvania, Ralph Cappy.......he was in my wedding. What do i do? Email him and talk with him about this?.........need some help here. How does this all link up?

 

Honestly, if i were well, and especially not cutting back, i could do a lot of the things on your list....my intentions are good, but the body is not willing.

 

i'll see what i can do.

 

xo judy

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Do we have an icon that we can post to get people to this site?...

 

Not an icon but an image that I made for this purpose.

 

It's in my signature here - and several others, too. The code and some examples are here:

 

http://cushings.invisionzone.com/index.php?showtopic=22127

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We need the Oprah effect!!! Maybe an email campaign to her show ideas or go through Dr. Oz. I put in a suggestion already, but with all of us maybe we could get through.

 

Look what she did for Barack. Maybe we could get to one of the presidential candidates. Healthcare is big issue for Hilary and Obama.

 

Just thinking big.

 

Stacey

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We need the Oprah effect!!! Maybe an email campaign to her show ideas or go through Dr. Oz. I put in a suggestion already, but with all of us maybe we could get through.

 

Look what she did for Barack. Maybe we could get to one of the presidential candidates. Healthcare is big issue for Hilary and Obama.

 

Just thinking big.

 

Stacey

 

THAT'S WHAT I WAS THINKING AND NOW WOULD BE THE TIME TO DO SO. I MEAN RIGHT NOW THEY WANNA DO ANYTHING TO GET OUR VOTES FOR THEM TO BE PRESIDENT.

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I know people who work directly for Barack Obama and John Edwards. I also have a direct line to Howard Dean, the chairman of the National Democratic Committee.

 

I would like to see us get ourselves organized first, and then launch letters to Oprah and presidential candidates all on the same day. If we trickle our letters in, we won't maximize the effect.

 

We have a lot of great idears here. Let's keep the topic rolling!

 

~Melissa

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I know many of us have written numerous letters to Oprah about Cushing's, with no response. You would think she might be interested, with her having such a struggle with her weight and now her thyroid. Dr. Oz takes the conservative line, from what I've seen, and she listens to him.

 

Melissa, you really should pm Cheryl F, who has been the main person working on Cushing's Awareness Day in the past. She has done a great job with not a lot of help and I imagine she would love to hear your ideas and get help from you. She can let you know what has been done up till now. She is not on the boards very often, but checks in from time to time.

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Melissa, you really should pm Cheryl F, who has been the main person working on Cushing's Awareness Day in the past. She has done a great job with not a lot of help and I imagine she would love to hear your ideas and get help from you. She can let you know what has been done up till now. She is not on the boards very often, but checks in from time to time.

Also, Jayne - she was the first one to organize the Cushing's Awareness Day and she pretty much did it single-handed talking on the phone with congresspeople and senators the first couple years. Jayne also sets up Cushing's Awareness tables at health fairs.

 

She'll also be a guest in a few weeks, so you can call in and ask her questions! LOL

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Girl you have me fired UP! I am exhausted right now, but all of those ideas you have are spinning in my brain and I am going to GET INVOLVED this year.

 

The care pages idea is a good one, but only if your friends & family believe you are sick, sadly many of us can't convince people we know. I hesitate to mention Cushing's to most of my family & friends because they immediately think it is a mental illness.

 

The Oprah effect is a good idea, but I have emailed her so many times my fingers are worn to the bone. I am sad that with her struggle with thyroid she has not done more. I get the O magazine and she did say in an article that because of her "mood" changes and needing to focus on her health that most did not understand she lost many friends. Maybe someday she will look into more complex endocrine diseases but Dr. Oz is pretty conservative and the medical stuff is pretty basic that he covers.

 

We need to focus on other talk shows that have less popularity, if we could get all the others it would be allot of coverage too.

 

I like the idea of womens magazines, especially the ones that focus on weight.....

 

A booth at the Endocrine convention is a fantastic idea, but I would need to be put in a straight jacket because I have such little respect for the jerks as a whole. I could be like the crazy animal in the corner frothing at the mouth as a warning to "what can happen if you ignore your patients"!

 

Melissa thank you for all of your fantastic contributions to our site! You are a powerhouse!

 

Lisa

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Melissa,

I have been thinking of how to get cushings on the Opra show too. I know many have tried but it still seems to be of no interest. As tragic as it is, I was wondering if we could speak with Lori's family members and see if we could send her story of not being dx'd in time and dr's not knowing how to do the surgery or offer proper post-op care to the Opra show. Also add someones elses story with it from one of the cushies here that has been fighting for years and still not able to get dx'd. Hopefull they would be willing to be a spokes person. Maybe the story, although tragic might spark some interest on how serious this disease is and how more dr.s need to be trained in this area to get us cured faster.

 

Great ideas going on here.

Hugs,

Lorri

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Keep persistent. Even if the ideas have been tried in the past, if you have the energy, try try again. We wouldn't have Cushing's Day if people gave up after trying so many times to get this past. What an achievement!

 

Having this disease highlighted on the Oprah show would really help others. Someday, our opportunity will be realized. Maybe we should focus on a local show in Chicago where Oprah or one of the people on her staff will see it and be interested in contacting us.

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I don't mean to sound like a downer I think it would be great to be on the Oprah show and get our word out however lalty her shows are about stars and singers so she gets good ratings. I think Dr.Phill would be even better considering there are tons of people out there thinking Cushings is in there head and that they have some mental illness. I think Dr.Phill would be great too, he more apt to help people and organizations too. Just my two sence.

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I would be happy to write some press releases for Cushing's Awareness Day, I had also planned to contact my local news stations to find out if they would be willing to do a segment on their early morning show - it';s usually the easiest time slot to get things like this in.

 

Also, is there a national Cushing's foundation established? If not, I think it would be a good idea to establish one, perhaps in Sue's name. That could be a forum to host community walks, runs, etc for fundraising and awareness. I know there is a lot involved in establishing a legally organized foundation, but I'm sure we can do it! We need all the recognition we can get and my suspicion is that there are many more out there are suffering day to day and not having any idea why.

 

Let me know what you think!

 

Hugs and Love,

 

Jada

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There is already an organization that Sue and others (including me) founded in 2001 called CUSH - short for Cushing's Understanding Help and Support.

 

CUSH has a website and is a non-profit organization. Before Sue (and Cookie) died, it was much more active and they held annual conferences, including one for Cushing's Awareness Day.

 

CherylF and ChatiCat are 2 of the current officers who post on these boards.

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I had a few more ideas about getting the word out:

 

1) On April 8, send a group of folks to New York City to be in the crowds at the Today Show and the Good Morning America show at the break of dawn. We can make big, eye-catching signs to get on camera, even writing the shows to see if we can get one of the anchors to talk to us briefly.

 

2) In another thread, we are talking about going green. Please consider using canvas bags. I buy a new canvas bag for $4 every time I go to the grocery store. I have about 10 bags now, and one of my favorite things is walking into that store with all those bags. Also, craft stores like Hobby Lobby and Michael's have plain canvas bags... perhaps we can create a big 8 in x 8 in Cushing's logo that we can iron on and take to the grocery stores across America?? Or just carry our books and other things around in?

 

Thanks for everyone's ideas. I haven't heard back from Cheryl or Jayne yet. If we can keep storing ideas here and matching people's talents with those ideas here in the thread, we will be so organized when it is go time in late February and early March.

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Melissa,

 

I really really want to do something for Cushing's Awareness Day

however with the way my mind and body are functioning (or rather, failing

to function) I don't know how much I can realistically do.

 

Too bad I no longer have a gift for the written word!

 

I have been thinking about Cushing's Awareness Day, however,

and really want to do something, at least locally,

I'm just not sure what I am realistically able to do.

 

This may sound silly and I know it's not any big thing,

but I have thought about contacting an old Neuroscience Professor I had

in college. The guy is great and is so passionate about what he does.

 

He has published a lot on learning and memory.

 

Of course, in the multiple classes I took from him we never learned about

Cushing's, but I want to contact him and see if I could possibly come talk

to his class one day or something (though I'm brainfogged as can be,

can't find words, and have always been horrible at talking in front of people,

even Pre-Cushing's). Since it's done a real number on my brain function

and memory and is what it hit first (ironically while I was in his classes)

I think I'd like to focus on that, as well as what it does to our emotions,

and weakness. ...since that's how it first presented for me, and now that I am

at my sickest, its these things that are the worst as well. ...

though of course I will cover all the basic appearance symptoms and everything.

I just thought it might be kind of cool to take it from a different angle, the symptoms

most people don't hear about even when they have heard of Cushing's.

 

I don't know. . .Just a thought.

 

Nicole

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Nic--

 

I think this is a good idea. We all need to reach out into the communities that we know, the friends and family we have, and then reach beyond that. Speaking to your professor could lead to a big jump in awareness, and I like the idear of you speaking in front of people. The other Cushing's site has a great power point that all of us could use, so that work is done.

 

All of us can do what we can do, and together, it will be a full blown / florid movement :sleep_1:

 

Melissa

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