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MelissaTX

Cushing's Awareness Day, April 8, 2008

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I thought about asking Dr F if he would like to collaborate with a psychologist to write a paper about how people are labeled with mental disease when they are ill, but I don't know if he'd go for it. I'm good friends with one of the founders of Institute for the Psychoanalytic Study of Subjectivity (IPSS hah!) and I know he'd be willing to do it. He was very supportive and believed me when I said that I was physcially sick on my Cushings journey.

 

I may still be out of work on April 8th and should be able to go to the Today Show with a sign.

 

I've had a couple of friends and co-workers who said they wanted to submit my story to a talk show so that I could get a makeover when I get better. A Cushings story would be great because sometimes you see those segments where someone is preparing to return to work after being ill and since they physically do not look the same they need to learn how to dress for their new body etc.

 

I think everyone should submit a story to their local paper about Cushings. When I was in college I wrote for my local one and trust me, they LOVE when people bring stories to them. Just go to the office and I'm sure almost all of us will have 100% success in getting something in.

 

This last thought and maybe its too out there, but I've been thinking about how the Cushing's are still socialites in NYC and rich people love to do charity balls all year long. (They are one of the oldest families in the US and have even intermarried with Roosevelts, Astors, and the like, so money shouldn't be an issue.) Maybe if they were contacted and reminded that a whole disease is named after a descendant who discovered it, then they'd want to raise more awareness?

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The other Cushing's site has a great power point that all of us could use, so that work is done.

 

You have to be sure you have permission before using anyone else's work. Also be aware that that particular power point is not generic for Cushing's. It is a promo for the other site.

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I think everyone should submit a story to their local paper about Cushings. When I was in college I wrote for my local one and trust me, they LOVE when people bring stories to them. Just go to the office and I'm sure almost all of us will have 100% success in getting something in.

 

I had talked to the local editor before our first trip to LA. She said she'd be interested. I thought of letting her follow us through testing, but wasn't that brave! I've just now put a call in to her. I'm finally ready to publicly share the story.

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First of all...Thank you Mertie and anyone else who recognized (CUSH Vice President) Cheryl Farrar's hard work toward making Cushing's awareness day become a reality. There was many people who worked toward this effort in the past years as far as sending letters to their congressmen etc. (names to numerous to mention) and everyone's work is appreciated. However, in 2005 it became a major priority for The CUSH Organization's President, Sue Koziol to see this happen. CUSH dedicated a lot of time and effort to this endeavor. Sue was stricken with cancer and passed away March 2006. CUSH officers wanted Sue to know that the resolution had been passed before she died. The resolution was not actually official until the day before it was passed on April 8, 2006. However, Cheryl kept Sue updated and Sue knew in her heart that her dream for the CUSH organization to see a special day set aside for all Cushing's patients would became a reality.

 

With respect for Sue wishes I felt like everyone would want to know how having a Cushing's awareness day got started in the first place. It is my understanding that CUSH initiated having a Cushing's awareness day several years before the first resolution was passed in 2006 (correct me if I'm wrong). As I sit here reading my copy of the National Cushing's Awareness Day resolution it states at the bottom that the "Secretary of the Senate is to transmit a copy of this resolution to the Cushing's Understanding Support & Help Organization (CUSH)." It is also my understanding that the blue and yellow support ribbons were initated by CUSH years before the first awareness day resolution was passed.

 

Cushing's Understanding Support & Help Organization (CUSH) is a non-profit 501-C organization recoginised by the IRS. and your tax deductiable donations are appreciated. MaryO is an individual...her websites and message boards are not affiliated with The CUSH non-profit organization. Mary is a member of the CUSH organization and serves on the general board of directors for the organization.

 

It is the goal of the CUSH organization to promote Cushing's awareness and hopefully some of you have plans to do that this year and perhaps CUSH could assist where possible.

 

CUSH has a website www.CUSH.org you can find information there about past Cushing's awareness day. The website is not finished but helpful and easy to navigate.

 

 

Oh behalf of the CUSH Organization

Cathy Gifford, Treasurer and interim Secretary

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"It is also my understanding that the blue and yellow support ribbons were initated by CUSH years before the first awareness day resolution was passed."

 

The blue and yellow ribbons were first just that - ribbons - and they were worn at Janice's funeral. Janice died September 4, 2001 just before CUSH was started. The family chose those colors because they were (and are) the color of the main website.

 

Janice-ribbon.jpg

 

 

 

More about Janice: http://www.cushings-help.com/memoriam_janice.htm

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Well as long as we are on the history of the Cushing?s awareness pins; actually, I first made the ribbon pins with Blue and Yellow for a health-fair I did for UCLA in 2000 after my own pituitary surgery. I used Blue and Yellow because those were UCLA?s colors and that is where I had my surgery, and I was in the process of starting the UCLA Pituitary Patient Support Group. I took a blue ribbon and a yellow ribbon just like the ones Mary you have here and I glued them together and glued a small safety-pin on the back. I put them in a plastic bag with a card that talked about pituitary disease and handed them out at the booth I had at the health-fair. I also gave them out at our first support group meeting on April 2001 and a few meetings after that but they were so time-consuming to hand make that I finally stopped.

 

Later when I first met Sue, I told her about the ribbon pins I had made for pituitary tumors and she asked if I wouldn?t mind letting her use them for Cushing?s and I said, that would be great.

 

I still think after all these years the pins are great and I still wear the ones I bought from CUSH.

 

I really have to say I certainly remember how hard Sheryl worked on the April 8th Cushing?s awareness day, and she made it happen!

 

And I remember how grateful I was when Mary O started this board, there was nothing on the Internet like it and we all were just sharing our personal stories and hoping to help others. Many of my absolutely dearest and closest friends to this day I met right here on this board.

 

So I guess everyone had a little something to do with all the great things that have evolved through the years and I think we have all come a very long and rewording way. And I'm sure if we all keep going in our own unique ways, we will look back years from now and know we have made a huge difference for others.

 

Peace and Blessings,

Sharm

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The blue and yellow ribbons were first just that - ribbons - and they were worn at Janice's funeral. Janice died September 4, 2001 just before CUSH was started.

 

Yes, CUSH was started just after Janice died. Below was taken from the first CUSH minutes.

 

"On September 16, 2001 a group of people met in Cape Girardeau, Missouri for fellowship and to discuss and thereby approve the establishment of a nonprofit organization, Cushing's Understanding Support and Help (CUSH) Organization.

 

Cookie Rothenberg took on the task of getting our Cushing's Awareness pins designed and made."

 

Before Cookie died when I ordered ribbon pins from CUSH she had a note in my package explaining how the pins came about. "The ribbons were used in memory of Janice to begin with and then they were adopted by CUSH to be made into pins that represent all Cushing's patients / awareness." The colors remained blue and yellow when CUSH had actual pins made but not in the same placement as originally used.

 

It's neat how anyone can wear a pin of specific color and show support all over the world for a cause.

 

Sharmyn, I remember my surgery was just after yours, Jacks and maybe Judy's. I was scared to death before surgery and you called me. I think I've told you what I thought about our first phone conversation...lol Cushing's awareness has come a long way since we were first diagnosed and especially since MaryO was.

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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

 

Thoughs are some real good ideas Lorri.

Also try for the Montell show and even the Tyra Banks show.

I know TB is very...idk...teenish, but perhaps trying for her show, we could reach younger people with this info. Perhaps, a teen watching that show would see a girl/guy who looks like they have Cushings, and would send them the info. :loveletter:

 

Adrianne ~

 

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.

 

 

Good idea. However, there is some flack about him not being a real DR...idk.

I love the idea however. :hug:

 

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

 

 

Awesome idea Nicole! :(

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Hey Nicole!

 

What a great idea! I'd be interested in participating in something to get the word out. Of course I never heard anything back from the Oprah show or Good Things Utah. You know that if it struck someone in THEIR family they would be all over it! Melissa has some great ideas and I think the time to get on the bandwagon is now, especially if it's something they're going to publish in a news article or magazine. I'll see what I can do, you do the same and let me know. :dunno:

 

Jen

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It's been wonderful hearing ideas of how to further the Cushings Awareness that we all want . And to hear how things were started so many years ago is still amazing to me. You each have been so helpful in getting us to where we are-

Sue was thrilled when she found out that the Cushings Awareness Day that so many had worked on would finally be a reality-as we all were.

So in keeping with the spirit of what we all are trying to do-bring Awareness to this terrible disease- Senator Inhofe's office is going to prepare the Resolution for us-for Cushings Syndrome Awareness Day April 8, ,2008. My thanks to Suzanne who has helped us these past three years in getting this done. (Suzanne is one of Sen. Inhofe's staff members).

Please let your senators know that they need to contact Sen. Inhofe's Washington DC office (Suzanne) if they want to be one of the co-signers.

Many blessings to each of you-Cheryl Farrar CUSH Vice President, OK State Rep

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I have designed a graphic for Cushing's and for Cushing's Awareness Day. I would love for everyone to check it out.

 

Graphic

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Hey there.

 

April 8th is approaching rather quickly, so that got me thinking about Cushing's Awareness Day and this thread. Does anyone know if the day was passed this year or what's going on with that?

 

Also, I don't know how much this could help or even how many people might see it, but I made a MySpace account www.myspace.com/CushingsSyndrome with Cushing's info on it. I thought if we added it as a "friend" and asked our other friends to do the same, that should generate some awareness. I just have the basic info and some videos on there right now, but we can get as creative as we'd like and I'm open to ideas. ?? I was thinking maybe to make it a little more personal we could add some people's journeys in the blog section. ?? I don't know..but feel free to add the account as your friend (although I hesitate to use the word "friend"..:tired:)

 

..And Shawna..like the graphic! Thanks for permission to use it. :)

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I work part time for my local newspaper, and I've been thinking about asking if I could write a story about Cushing's. Problem is that my editor likes to keep things kind of small-townish, and most of the feature stories are about local people who face adversity etc.

 

But I think if it is a national day this year as it has been for the past two then I could make it sound important enough. If anyone would like to offer suggestions or ideas, or put up their name and stories to be included just let me know. I can send you my email address if you message me.

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