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Cushing's Awareness Day

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Cushing's Awareness Day

 

A goal since Mary started the message boards in 2000.

 

April 8th, Dr. Harvey Williams Cushing's birthday, our choice for a National Cushing's Awareness Day.

 

We've never given up on this idea.

 

First of all I want to say a big Thank You to Jayne, who has worked so hard toward this goal. Jayne wrote to her congresswoman and is in the congressional record. Jayne even wrote to the President.

 

Jayne didn't work on this over the summer as she needed the summer to recover from her lung surgery. I'm happy to say she's feeling better.

 

I know that many of you wrote to your congressmen. I have no idea who or how many of you did this with the exception of:

 

Emily Shelton, who contacted her congressman's office last spring, and in turn, his office contacted me.

 

Stephanie Womack Gilchrist, who sent me a copy of the letter she sent to her congressman.

 

 

Here's what's been happening since the end of September.

 

I talked with Emily Shelton and Jayne Kerns a couple of times about Cushing's Awareness Day about what we should do next.

 

Cheryl Farrar began contact with her congressman's office.

 

I talked with Emily's congressman's office and he requested a Cushing's Syndrome Fact Sheet.

 

I combined Mary's, Jayne's and my information on the fact sheet and sent it to Emily. Emily added her ideas, formatted and completed the fact sheet. Then there were a few changes made by CUSH officers and we have a final copy.

 

Over the first two weeks of October Cheryl had several contacts with her congressman's office.

 

About time we finished the fact sheet Cheryl's Senator decided to do a Senate Resolution for Cushing's Awareness Day and shortly thereafter sent a "Dear Colleague" letter, requesting support.

 

At the same time, Emily sent her Representative the Cushing's Syndrome Fact Sheet and his office is going to work on this in the House of Representatives.

 

I also talked with Stephanie and she contacted her Representative's office again. They do have her letter in Washington DC and she was given a contact in her Representative's office in DC to write to so she did and mentioned the other Representative's who are willing to support this day.

 

Yes!!!

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I forgot to tell you.... I believe the Cushing's Syndrome Fact Sheet is for all of Congress... :glare:

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It couldn't hurt, Lorrie. Contact me, if you'd like, for more information.

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Yippee!!!!

I had no idea things like this could be possible, I appreciate all the work that others have done to make the way easier for us to contact our local people.

...with the help of some great Senators & Congress Reps that truly care that we are dealing with these issues...this will happen!!!.....can short fat people do handstands on the internet? :glare::angry2::angry:

Thank you Jayne, Sue, Emily, Stephanie, & especially Mary who makes everything happen, one way or another!

We appreciate all your hard work! Love, Cheryl F

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Any chance there could be a list of the Congress members that have been contacted so we can see which ones haven't been contacted?

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Lori,

I would just contact my personal Senator/Congress person and let them know of your interest. (US Senate and/or Congressman). I've contacted a few friends from other states and asked them to contact their congressman/senator as well. It goes over better if it's from someone in their state asking. If they wind up getting several request from the people in their home state, that's even better. Originally I sent a letter I found on the website that gave me an outline of what I could say to them, and then I added my own personal story.

Hope this helps...Cheryl F

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We are not posting the Senators and Representatives names on the message board. We do not have permission to do this. That's why I asked Lorrie to contact me if she'd like more information. :D You can contact any of the people who are involved, not just me.

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This is how it works.

 

Stephanie just called me. Her representative's office called her this morning and is willing to support Cushing's Awareness Day. He said he is looking forward to receiving the House of Representatives "Dear Colleague" letter.

 

This is getting so exciting.

 

Dare we believe?

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Lori, I just reread your posting .. I read it wrong. Not that I can list the Congressmen anyhow..... I thought you wanted to know who'd been contacted. We have no idea who all has or has not been contacted in the past. We started out with one in the Spring and added another and then it was three and now four.

 

Basically we need someone in the House and the Senate to introduce legislation for Cushing's Awareness Day. They have to have support from their colleagues.

 

In the posting just before this one.... I posted about Stephanie's Representative. She had originally contacted his office in the spring. When I started this topic this was one of the things I wrote: ""I also talked with Stephanie and she contacted her Representative's office again. They do have her letter in Washington DC and she was given a contact in her Representative's office in DC to write to so she did and mentioned the other Representative's who are willing to support this day.""

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Wow, we still haven't established this date yet??? I'll send my reps and congress people a note again....very frustrating.

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Hi!

 

I'm just so excited about this!!!!! :D

 

I sent a letter to both my Senators and my Nebraska Congressman.....but it was a letter of my own that I typed up with my own personal story as an enclosure. I, OF COURSE, gave some statistics, and dirrected them to this web-site for any additional info that they might need.....BUT....

 

Is there additional info that I need to send them?

 

~Autumn

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Another Question....

 

The Cushing's Fact Sheet......is there a printable version that we can share with out local Dr's, hospitals, etc. to create awareness?

 

~Autumn

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I know with the holidays coming, that going someplace in April is probably the last thing on your mind...but please be thinking about it...after I get confirmation from all of our Doctors (have 2 confirmations) we will list the info...

Hope to see you in OKC....those that I have talked to that aren't going to be able to come...we'll miss you tons!

 

It's only 112 days until the Conference! cheryl f

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THE RESOLUTION WAS PASSED!!!

 

APRIL 8TH IS NATIONAL CUSHING'S AWARENESS DAY!!!

 

WOOHOO!!

 

This is fantastic. Thanks to all who have worked so hard to make this happen.

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109th CONGRESS2d SessionS. RES. 423Designating April 8, 2006, as `National Cushing's Syndrome Awareness Day'. IN THE SENATE OF THE UNITED STATESApril 4, 2006Mr. INHOFE (for himself and Mr. COBURN) submitted the following resolution; which was considered and agreed to --------------------------------------------------------------------------------RESOLUTIONDesignating April 8, 2006, 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 8, 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, 2006, 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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This was Sue Koziol's dream. Jayne, you got the ball rolling when you got Cushing's mentioned in the Congressional record. Then we began the letter-writing. Then, along came Cheryl with all her friends in "high" places and all her enthusiasm convincing her Senator to champion our cause. I honestly have never seen a cushie with such energy and drive. Now her "party" has turned into a conference. God bless her!!

 

We must now think of ways to celebrate and promote this next year, and the next, and the next. I hope to see a day when there will be no stories like Lisa A, or Susan M, or any number of others who went undiagnosed and were abused by the medical system. I don't want to see anyone else go through years of failing health and not knowing why.

 

This is a happy day!

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Hey All,

So glad to hear this great news.

 

Jackie

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:P:blink::angry: I am still testing but with all of the research & Dr. Ludlams visit I am convinced that I have cushings, so I am going to take that day & make it mine. I also hope that others do not have to endure the abuse & slander that I have lived with for too long. I am angry & fired up and if it is my only accomplishment in life, I am going to somehow make a change about how the mentally ill or precieved mentally ill are treated in our medical system. It is shocking that we have to deal with such contempt. :D

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Lynne,

Speaking of next year...

I asked Mary to ask the CUSH conference attendees what they want to do about next year. I made several suggestions, like east coast in 2007 and west coast in 2008. I'll let folks stay with me :angry: Maybe we can tour Washington DC and have a Senator or Representative speak at a CUSH conference.

I am hoping to get a NCSAD voted on in Congress for every year (perpetual). This will be a big letter writing campaign- to include doctors and everyone we know.

 

I hope Sue is smiling for us in Heaven right now!

 

 

Jayne :P

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Happy Cushing's Awareness Day! I'm not sure Sen. Inhofe understand how much we truly appreciate their efforts..Sen. Inhofe's office was so great-all of their staff just bent over backwards, especially Sabrina....

But as Lynne said, it wouldn't have happened if not for all the help of each individual that helped make it possible, each in their own way.

And the quest continues, we need to contact our media today and let them know what this disease is,

We need more reps in each state, so that we can have support groups everywhere. When we get more awareness, we can also show that there are many more people with cushings.

One thing that at least two of our speaks said yesterday, that Cushing's is way underdiagnosed. I know we knew that, but hearing medical personnel say it still amazes me. One mentioned also that with so many people diagnosed with diabetes and hypertension, it was amazing that they are never tested for Cushings.

Anyway, I'll look at my notes later and tell you more about what they said....

Oh! One biggie, the endo said that the dex test levels have been changed as of this year. The "normal" level is now 1.8....so when my 2nd endo said I didn't have Cushings because my dex was 4.1.....well! Yippee! (the others said I had it, just the one said I didn't). Anyway, I"m going to meet the "girls" and will talk to you later! love, cheryl f

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I've just spent the last 45 minutes on the Internet searching..... It appears to me that we DO NOT have an ANNUAL Cushing's Awareness Day. I think the honor was for ONE DAY ONLY--April 8, 2006. Am I wrong about this?

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That is correct, it is a one day only event, this year. The Senate only passed this Cushing's Awareness Day Resolution, and Sen. Inhofe has said that he would be happy to sponsor it again next year. They explained why it's a one time thing only...and for the life of me I don't remember why....maybe it has to be passed as a bill in both the Senate and House and the President sign it...I don't know. I'll ask my friend again if she can find out how we can do that and get back to you on that......this would be the time to start working on it for next year, and to be able to get a perpetual Cushing's Awareness Day...so it appears that we can have one next year due to Sen. Inhofe's efforts, but we all need to work with our Congress people to do the same.

The Congress person I checked with in OKC, was so not helpful. So we have alot of work to do. He won't be in our district next year, so I can get some help from the new one, whoever it is....

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I had sent out a short note about CUSH and the people who have pushed to organize Cushings Awareness DAy. I sent a mass email and included my doctors. I also attached a copy of the amendment. I have received some wonderful replies from family, friends and doctors. I would like to share a few:

 

Dr. J.....Neurosurgeon Allegheny Hospital, Pittsburgh, Pa.

 

Congratulations for the successful growth of your organization. Despite of your busy personal life, you have devoted your time and recourses for the public. I have noted great assistance to needed people who suffer Cushing's. HD J.

 

 

Dr. Lynn Burmeister, My Endo who now practices in Minneapolis.......

 

I am sure you were instrumental in this -- congratulations

 

Lynn Burmeister

 

My Sister who has followed my Cushings Journey:

 

congratulations!!! i know this is a tough one to understand....hopefully there will be awareness for not only the sufferers but their families and friends who have a hard time understanding this disease!!

hope you are feeling better.

 

My other sister in Boston:

 

Judy,

I assume that a lot went into making Cushings Awareness Day happen - congratulations. There sure were a lot of Whereas's in the statement!

 

Just wanted to share, and thought you would enjoy reading some comments, especially from Dr. J..

 

Judy from Pgh

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