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cheryl f

Cushings Awareness Day 2007 passed!

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It's official, the Senate Resolution 127 passed last night making April 8th, 2007 National Cushing's Awareness Day. Let your newsmedia know!

 

PS, and if you can find Sen. Jim Inhofe's e-mail address (I am late for work and don't have it immediately avail) please tell them how much we appreciate their efforts. He's the US Senator for Oklahoma.

 

Thanks, Cheryl Farrar

CUSH Vice President

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NICE!!!!!!!!!!!!!!!!!!

 

I'm so happy about this!!!!!!!!!!!! YIPPEE!!!!!!

 

Good job to all of you that made this happen...............we appreciate you!!!

 

Bec

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Cheryl,

 

Thanks for all your work and thanks for letting us know.......

 

Does this mean April 8th will be National Cushings Awareness Day every year now?? (I know last year it was just a one time thing)..........if so that is just fantastic !!!

 

This will set up all kinds of possibilities for future events.......like you said, call and alert your local media.

 

Cheryl, can you give us "definite info to give them, or is there a letter that has made this official - so we can use that when we write or call the media -??

 

I know youre at work now, but when you read this maybe you can give us more info??

 

CONGRATULATIONS !!!!!!!!!!!!!!

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Thank you. That is so great.

 

I have had a small Tennessee paper do an article a few years back. But found the author didn't take notes well or chose to ignore what I said. Most of her quotes and facts were off. It was still worth while, because the pictures got a lot of attention. And several people were tested and 1 diagnosed from it.

 

Now I live in a biggish town. Are you guys gonna give anything to the media or mainly tell your story ? Just looking for suggestions. I would like to do better than last time.

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Hi all,

It's after work now and I have more time to send info.

I received the PR release from Sen. Inhofe's office in a 2nd e-mail. For some reason it has a link to another Cushing's site, and since the release has already been sent, there isn't anything we can do about it. But it's for all of us anyway and we just have to look at it that way.

I did ask them if they could remove it however....lol....

So if you'd like me to send you a copy of what I have, I'll be more than happy to send you the forward.

Somethings you might do:

copy the press release and send it to the physicians in your area. I'm going to do that as my goal this year is to get more info to the PCP's on the symptoms. I"m going to get a fact sheet to give them with some personal info on my particular case.

Call your local tv stations and let them know that the resolution has been passed-it's actually on Easter, but maybe they could do it on Saturday if they'd do a little blip. Let the newspapers know.

I don't know....if we just help one person be diagnosed it's worth anything we do.

My e-mail is cheryl1957ann@sbcglobal.net if you want to e-mail me I'll reply and send the release to you.

Happy Cushings Day! Cheryl Farrar

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Also...

 

From Rebecca Sibley

 

I just wanted you to know that this is the response from one of our house of representatives in SC and that is a going to co-sponsor the house bill for Cushing's Awareness Day!! My letter to him is below too. I have tried to get this in our paper too but so far they won't do it. I sent it in to the state paper and I know they have at least opened it but have no idea if they will print it or not. I will update them that Rep Bob Inglis will be a co-sponser so that might make the news!

Thanks,

Rebecca Sibley

 

Rebecca,

 

Thank you for bringing this to my attention. You are the first contact I've had on this topic. I'm so sorry to hear how you have suffered with this, and I pray that you are continuing to get relief.

 

By copy of this note, I'm asking Philip Van Steenburgh of my office to sign me up as a co-sponsor of the House bill.

 

Blessings,

 

Bob

 

? http://communitytalk.rd.com/WebX?14@927.Fm...K.0@.feb9f0b/45

 

From Reader's Digest:

 

Have a question about heart health? Ask Dr. Mehmet C Oz!

Dr. Oz is a world-renowned heart surgeon at New York-Presbyterian Hospital, Reader's Digest columnist, and vice-chair and professor of surgery at Columbia University. He will be answering your questions in a LIVE CHAT on Thursday, March 22 at 2 p.m. EST.

 

Send in your questions today and visit rd.com/chat on March 22 to read Dr. Oz's answers.

 

Read the monthly Reader's Digest column, "Health IQ", by Dr. Oz and Dr. Michael Roizen for more tips on feeling your best.

 

JayneK Wed 03/21/07, 12:12:49

 

National Cushing's Awareness Day is April 8. How is the heart affected by having Cushing's Syndrome/Disease? What can be done to strengthen the heart muscle when surviving Cushing's?

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My understanding is that it will be only this year again, and to get it each year we have to have someone sponsor it. I'm not sure why it can't be perpetual, but that's my understanding.

I'm not sure if it's because it's only a resolution in the US Senate and not in the House as well that makes a difference or not. Maybe if they both present Resolutions and the President signs it, maybe then it can be perpetual. I'm not sure. Wish I had more info. Thanks again for everyone's help. Cheryl

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Thanks for all the hard work, this is wonderful!! I am passing the info on to my local media so hopefully someone will air it here. Is it better to add a little personal info and tell your story or just send the resolution info to the media?

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Cheryl: Thanks so much for all your hard work. This awareness definitely impacts the lives of others as well as ourselves. T H A N K S!

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I did some searching on the net and found this- I hope it works.

Don't know if that means every year or just 2007?

 

http://frwebgate.access.gpo.gov/cgi-bin/ge...mp;position=all

 

Tammie

I saved that in image (below) and as a PDF file, just in case they change the link someday we'll always have it :) Thanks for finding this, Tammie!

 

awareness-day2007.gif

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Hi ya'll...

First, the tornados were about 9 miles west of me in OKC, and 3 miles west of my daughter and brother-in-law...we're all ok, but there was some damage where it hit.

Mary, how do I get a copy of that stuff? I'm going to go back and look at what has been posted, maybe there is someone who has posted the info....

Thank you for doing that. It sounded good, huh!

Anyway, last year I contacted the different newstations and newspaper. Also small towns around OKC, as far away as 60 miles even. I e-mailed some info and faxed other when I could. There are different ways they like it done.

I typed a short statement (like Cushing's problems are ever short) about what had happened to me and sent the info on the Resolution along with my information for them to contact me. Then I faxed/mailed and made phone calls to follow-up.

I think it helped because I was having a forum here in OKC last year, but not sure that it mattered. If you can contact the reporter who handles health issues, that's the best thing to do.

Anyone who wants me to forward the Press Release please e-mail me at : cheryl1957ann@sbcglobal.net and I will forward it to you so that you can include it in your information.

I'd still like to have a luncheon on April 14th here in OKC if anyone is close enough to come....I'm here....

If you want to call me, e-mail me with your phone # and I'll call you back. Hope this helps...Cheryl

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Cheryl, you can downnload that as a PDF by right-clicking this link and choosing "Save Link As...": http://www.cushings-help.com/awareness2007.pdf

 

or save the image file I posted above by right-clicking on that and choosing "Save Image As..."

 

In either case, save it to a place where you'll remember that you put it :P

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Thanks Mary.....it didn't come up for me tho because it showed to be a pop up of all things! Anyway, thanks for the info. I'll see if I can figure out how to do it....love c

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Maryo, I was able to print it from the link that Tammie listed. I think I'm going to include this in the info that I send to the PCP's here in OKC area. It sounds soooo great!

Thanks again! cheryl

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Congratulations to everyone who worked on Officially Designating April 8th as Cushing's Awareness Day!! This is awesome!! :(

 

I found the bill here: http://thomas.loc.gov/cgi-bin/query/z?c110:S.RES.127:

 

Designating April 8, 2007, as `National Cushing's Syndrome Awareness Day'. (Agreed to by Senate)

 

SRES 127 ATS

 

 

110th CONGRESS

 

1st Session

 

S. RES. 127

Designating April 8, 2007, as `National Cushing's Syndrome Awareness Day'.

 

 

IN THE SENATE OF THE UNITED STATES

 

March 27, 2007

Mr. INHOFE (for himself and Mr. DODD) submitted the following resolution; which was considered and agreed to

 

 

--------------------------------------------------------------------------------

 

 

RESOLUTION

Designating April 8, 2007, as `National Cushing's Syndrome Awareness Day'.

 

Whereas Cushing's Syndrome annually affects an estimated 10 to 15 people per million, most of whom are currently between the ages of 20 and 50;

 

Whereas Cushing's Syndrome is an endocrine or hormonal disorder caused by prolonged exposure of the body's tissue to high levels of the hormone cortisol;

 

Whereas exposure to cortisol can occur by overproduction in the body or by taking glucocorticoid hormones, which are routinely prescribed for asthma, rheumatoid arthritis, lupus, or as an immunosuppressant following transplantation;

 

Whereas the syndrome may also result from pituitary adenomas, ectopic ACTH syndrome, adrenal tumors, and Familial Cushing's Syndrome;

 

Whereas Cushing's Syndrome can cause abnormal weight gain, skin changes, and fatigue and ultimately lead to diabetes, high blood pressure, depression, osteoporosis, and death;

 

Whereas Cushing's Syndrome is diagnosed through a series of tests, often requiring x-ray examinations of adrenal or pituitary glands to locate tumors;

 

Whereas many people who suffer from Cushing's Syndrome are misdiagnosed or go undiagnosed for years because many of the symptoms are mirrored in milder diseases, thereby delaying important treatment options;

 

Whereas treatments for Cushing's Syndrome include surgery, radiation, chemotherapy, cortisol-inhibiting drugs, and reducing the dosage of glucocorticoid hormones;

 

Whereas Cushing's Syndrome was discovered by Dr. Harvey Williams Cushing, who was born on April 8th, 1869;

 

Whereas the Dr. Harvey Cushing stamp was part of the United States Postal Service's `Great American' series, initiated in 1980 to recognize individuals for making significant contributions to the heritage and culture of the United States;

 

Whereas President Ronald Reagan spoke on April 8, 1987, in the Rose Garden at a White House ceremony to unveil the commemorative stamp honoring Dr. Harvey Cushing;

 

Whereas following the ceremony, President Reagan hosted a reception in the State Dining Room for Mrs. John Hay Whitney, Dr. Cushing's daughter, and representatives of the American Association of Neurological Surgeons; and

 

Whereas the Senate is an institution that can raise awareness in the general public and the medical community of Cushing's Syndrome: Now, therefore, be it

 

 

Resolved, That the Senate--

 

(1) designates April 8, 2007, as `National Cushing's Syndrome Awareness Day';

 

(2) recognizes that all Americans should become more informed and aware of Cushing's Syndrome;

 

(3) calls upon the people of the United States to observe the date with appropriate ceremonies and activities; and

 

(4) directs the Secretary of the Senate to transmit a copy of this resolution to the Cushing's Understanding, Support & Help Organization.

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Thanks for sending that link-it was most helpful as was Tammie's and MaryO's for those of us who are severely computer iliterate.

Who is Mr. Dodd I'm wondering tho? Is he another Senator? That's my guess,but I don't know for sure. Last year Sen. Coburn contacted Sen. Inhofe and co-sponsored the resolution. Anyway..we'll have to figure this one out! cheryl

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Thanks Mary(Mertie)...

I meant to look that up and plum forgot! Anyone here from Connectiuit? Thanks also to Mr. Dodd! cheryl f

 

PS MaryO-the boards are so cute with the Easter theme....

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My understanding is that it will be only this year again, and to get it each year we have to have someone sponsor it. I'm not sure why it can't be perpetual, but that's my understanding.

I'm not sure if it's because it's only a resolution in the US Senate and not in the House as well that makes a difference or not. Maybe if they both present Resolutions and the President signs it, maybe then it can be perpetual. I'm not sure. Wish I had more info. Thanks again for everyone's help. Cheryl

 

I want to offer help in trying to get this permanent for every year. I have contacts for three Congress people in Houston who serve in the House of Representatives. I have the cell numbers of their chiefs (-ves?!) of staff.

 

Christopher Dodd (D-CT) ran for president this year but has already dropped out. Perhaps someone can contact him to get him to co-sponsor again, and perhaps I can get someone to co-sponsor with him from Houston (D-TX).

 

Any body with any close contacts with US Senators from their state? I do not. We could launch some campaign to lobby them, perhaps if someone drafts a letter, someone else can arrange to print, stuff, and mail the envelopes to all 100 Senators? Let's come up with something good!

 

~Melissa

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