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29 replies to this topic

#1 cheryl f

 

    CUSH Vice President

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Posted 27 October 2005 - 08:32 PM

We've been working with the OK US Senator, James Inhofe to get a resolution for Cushings Awareness Day April 8, 2006. He has sent out "Dear Collegue" letters to other Senators to ask if they will help co-sponsor this resolution. Only one Senator-Tom Coburn from Oklahoma has replied to his request so far.
They are going to wait until March to actually introduce the Resolution, and are telling me that to do it sooner might actually get it delayed in committee.
The Senate Leadership has asked them as well to wait until March and said that this is actually a very easy Resolution, that when brought before the Senate it should be easy to pass.
However, they still need other Senators to help. Will you please contact the Senator's office in your State, and ask the person who is in charge of the Health issues, to contact Suzanne at Sen. Inhofe's office 202-224-4721. This telephone # is for the Staff of your senator to call. Ask the Senator if he/she will co-sponsor the Resolution making April 8, 2006 Cushings Awareness Day. I included in my request a paper telling about my Cushings experience as well. My understanding is that individuals from the states need to contact their own Senators. I asked my friends in Utah & Idaho if they would contact the Senators in their state also.
This can and will get done with your help...you can also contact your Congress person, as some Congress people are trying to get this done in the House of Reps as well.
Please do this as soon as possible as they will be going to recess with the holidays coming up....
I looked in the telephone book for my US Senator's names under Federal telephone #'s. It would probably be on the internet also if you don't know your senator's name.
If you have any questions, contact me at cheryl1957ann@sbcglobal.net or
SuziQ at SuziQ8846@aol.com
And when this gets passed, we are having a party in OKC on April 8th!!!!
Be there or be square....love ya, cheryl f

#2 nycsmile

 

    Allison

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Posted 27 October 2005 - 09:48 PM

You can count on the NEW YORK Senators/Representatives hearing from me.

For those who need their state's information:

CLICK to find your Senators

CLICK for Representatives in Congress


THANK YOU, Cheryl and friends :huh: for all your efforts in this VERY important matter!

#3 cheryl f

 

    CUSH Vice President

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Posted 27 October 2005 - 11:56 PM

Hi NYCSmiles,
Thank you for your very kind post...and for adding the senator/congresspersons info on the site. This will get done and if even one more person learns about it, it will be a success!
Let me know what your senator's say, I'm curious about what they say...
Hope you are nice and toasty in NYC, did I hear it was snowing???? Take care, Love, cheryl f

#4 nycsmile

 

    Allison

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Posted 28 October 2005 - 12:20 AM

If I get a reply from any of them I will post it. Sadly, I have emailed/fax'd/snail-mailed them on another issue in the past and only Senator Hillary Rodham Clinton replied but never followed through. Still, I think the fact that I was able to reference the two Senators from your state who are already "on it" will help tremendously! At the very least they might remember "hearing" about this somewhere when your Senators bring it up.

Maybe I should go ahead and buy them Cushing's Awareness Bracelets-- mail them a few days after my letter with another copy of my letter. Who knows? Maybe it will prompt the mail-opening assistant to actually read my letter. At worst they both end up in the garbage... But who is to say some Intern does not find it-- likes the color-- and starts wearing it! :lol:

No snow yet but I am FREEZING TO DEATH with some post-op weirdness. I've got so many layers on I feel like a kid mumified in a snow-suit :o -- I also have the heat blasting. It's cold out but it's not THAT cold yet. I don't know what the heck is going on here! :huh:

#5 cheryl f

 

    CUSH Vice President

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Posted 28 October 2005 - 12:55 PM

NYCSmiles,
I'm not sure if it would help, but if you call the Senator's offices, and see if you can talk to the person who deals with the Health issues, you might let her know you want to send the bracelets or whatever. Or if it's possible, if you live close by, you might actually visit their Senate office there in NY and meet with some of the staff. It's worth a try....they are so busy right now in Washington, that getting to know their staff might be the easier way anyway...good luck, we'll get this going!!! Don't forget, party in OKC April 8th!!!

love, cheryl f

#6 cheryl f

 

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Posted 01 November 2005 - 02:59 AM

Two of the Rep's offices in OK called me today...told me to fax the info and they'd look into it...

#7 SuziQ

 

    CUSH Founding President We will always miss you, SuperSue!

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Posted 01 November 2005 - 03:05 AM

Reps? Cheryl, if you're talking about the House of Representatives in Congress you need to have them contact K. Robertson.

#8 SuziQ

 

    CUSH Founding President We will always miss you, SuperSue!

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Posted 01 November 2005 - 03:10 AM

Oh! And I'm also checking into the cost for 535 CUSHings Ribbon Pins..


Posted Image

It's the one on the right....

Duh! :blink:

#9 AutumnOMA

 

    Chatty Cushie

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Posted 01 November 2005 - 03:21 AM

Hi there!

You know that the State of Nebraska will here from me. I'm also going to send the info to my family in New Mexico, California, Kansas, Colorado and Iowa. They have all said that they would be willing to put forth some efforts in their own states to at least try and help.

I'm READY for a party in OKC....Count us in!

~Autumn

#10 Darlindebe

 

    Chatty Cushie

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Posted 02 November 2005 - 01:48 AM

If I am correct.... I thought there was a form letter to send to our senators. IS it somewhere on here....I am not good with words...so some sort of outline would be helpful. I will pass this info on to all my friends in hope they can help get this passed.

#11 nycsmile

 

    Allison

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Posted 02 November 2005 - 03:37 AM

A sample letter I found posted on this site.

As Sue wrote below-- do not copy and paste this letter. It is just a sample. We need to write our own, personal, letter using the most UP-TO-DATE information on the resolution. See the SuziQ post below dated 11/2/2005 for additional information.

#12 cheryl f

 

    CUSH Vice President

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Posted 02 November 2005 - 03:37 AM

Sue,
Well of course I told them to call Kyle...silly girl...gave them all the info. Also sent the letter that I'd basically sent to the Senators, along with my personal experience. I'm very hopeful that they will get ahold of him, sounded really positive. Actually I've talked to 3 different Rep's staff members in the past two days. Had one of them laughing when I told them about the "panting" symptoms.....
Autumn, party on girlfriend! We'll have to think of some fun things to do...
Debbie, I found the letter on the website, if you can't locate it e-mail me and I'll type it for you in an email...
All will be well, this will get done! love ya! cheryl f

#13 Lori L

 

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Posted 02 November 2005 - 07:33 AM

I'm also taking on CA state for In-Home Social Services. I was denied because the interverwer didn't even know what Cushing's was. Federal Law states that a person with cancer can not be denied In-Home care. I wouldn't even ask for the assistance except I can't perform housekeeping duties to maintain the home or property to be in safe condition for my and my children. How far can I go with this one? United States Dept. of Health & Human Services?

Anyone have info to back my appeal with CA Dept. of Health and Human Services?

#14 SuziQ

 

    CUSH Founding President We will always miss you, SuperSue!

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  • Interests:I collect dolls and bells and recently angels and faeries. I enjoy the natural beauty around us. I am committed to helping others find their way through the maze of Cushings. I believe God is with us at all times.

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Posted 02 November 2005 - 11:37 AM

Please do not use the form letter. That is a suggested letter. You must alter it to make it your own.

Also, there is a protocol to follow for emailing your Senators and Representatives.

Letters to Congress

Include the following for your senators:

"""please contact the Senator's office in your State, and ask the person who is in charge of the Health issues, to contact Suzanne at Sen. Inhofe's office 202-224-4721. This telephone # is for the Staff of your senator to call. Ask the Senator if he/she will co-sponsor the Resolution making April 8, 2006 Cushings Awareness Day. """


Include the following for your representatives:

"""please contact the Representative's office in your district and ask the person who is in charge of Health issues, to contact Kyle Robertson at Senator Geoffrey Davis' office 202-225-3465. Ask your representative if he/she will co-sponsor the Resolution making April 8, 2006 Cushing's Awareness Day."""

We all have two Senators and one Representative we can contact. The Resolution has been started. This can be done!


If you have any questions, please contact Cheryl or myself.

Thanks!

Sue

#15 nycsmile

 

    Allison

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Posted 02 November 2005 - 03:21 PM

Please do not use the form letter.   That is a suggested letter.  You must alter it to make it your own.

Don't worry Sue, I wrote my own letters to my two Senators (each a bit different) using the up-to-date information on the resolution and the contact information Cheryl had provided in her post. I am still working on my Rep letter. I went in search of that sample when someone above was looking for it. I have since adjusted the post to direct people to your message posted today.

#16 SuziQ

 

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Posted 02 November 2005 - 05:18 PM

Thank you! Thank you!

Some of us do need the guidance of a form letter though....lol....such as moi. :wub:

#17 cheryl f

 

    CUSH Vice President

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Posted 03 November 2005 - 04:22 AM

and moi....lol c Let us know if anyone hear's from their Reps/Senators....

#18 cheryl f

 

    CUSH Vice President

  • Member of the 1000 Post Club
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  • Location:Oklahoma City, OK
  • Interests:grandbabies, cake decorating, scrapbooking, healthy cooking (and unhealthy! haha), crafts, church activities

  • United States

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Posted 07 March 2006 - 04:11 AM

I've posted this other places, but need your help now....
Please contact your US Senator, have your friends, your out of town relatives, contact their US Senator this week, and ask them to contact Sen. Inhofe (OKla) office to co-sponsor a resolution, making April 8th, 2006 Cushing's Awareness Day. They will be getting a "Dear Collegue" letter in the next few days.
They need to contact Suzanne Meledeo in Sen. Inhofe's Washington Office. They will be able to get the telephone number.
thank you so much,
If you can, ask your senator's office to contact you back and let you know if they will help co-sponsor the bill. Let me know if possible.
thank you so much, Cheryl Farrar cheryl1957ann@sbcglobal.net

#19 Darlindebe

 

    Chatty Cushie

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Posted 07 March 2006 - 04:56 AM

Cheryl I just sent an email to Debbie Stabenow in Lansing Mich. Anything else we can do?

#20 Darlindebe

 

    Chatty Cushie

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Posted 07 March 2006 - 04:59 AM

oops posted in wrong place...but wanted to let you know I sent an email to my senator in Michigan.




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