cheryl f

Ok, I started to wonder...is it or not? I checked the Brain Tumor Registry, and it is listed as a brain tumor. The Presidents message says in 2004 the Public Law 107-260 mandated MPCr to collect data on all primary brain tumors from most of the US. CBTRUS-Central Brain Tumor Registry of the United States, has many different tables with the median age, Non-malignant Male/Female, whites/blacks, etc. Also the CBTRUS has estimated new cases include all primary malignant and non-malignant tumors of the brain, central nervous system, pituitary and pineal gland, olfactory tumors of the nasal cavity. So what can I say? Look at the website and see what you think.

It is easier to say brain tumor...as opposed as trying to tell someone where the pituitary is....

Seems to me when I saw the brain tumor registry, they also classified the pituitary tumor as a brain tumor....hum...I don't care as long as he talks about Cushings....it's going to be what he's thinking...tune in tomorrow....and ya know, Rex Morgan MD never gets any older...still a good lookin' hunk....lol

However, when I had my appt with my neurosurgeon, he did call it a brain tumor, and I've seen a few references to it that way as well....my fingers are crossed!

Did you see the comics today? In Rex Morgan, M.D., it talks about his golf pro praising him because he saved his life when he had a BENIGN BRAIN TUMOR!

Do you think it's possible???? I'm so excited! What do you think????

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

What's the name of the new Patricia Cornwell book? Is it in the Scarpetta series? Love those books! Cheryl F

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

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

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

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

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

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

FYI, If at least 15 are diagnosed per year, and the population is appx 297,524,137 in the US, would that be 4,455 per year? The world population # I found was 6,475,259,016, and would that be 97,125 people appx per year?

I'm terrible at math and may not have calculated this correctly....

But I did call NIDDK to see if they could give me an actual figure...we'll see if they call me back. I was just curious at the actual number...amazing that Christy and I found each other here in OKc with it being SOOOOO rare!

Love ya, cheryl f

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

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?

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

Thanks Jaimie!

That was very interesting. My friend is going to be a nurse and took an anatomy class with cadavers....well when they got to the part about the brains, they were incredibly interested in my pit surgery. They wanted to know all about it, how big the tumor was and how they did the surgery. Told my friend I would be a "show and tell" if they'd like....thanks for shaing this with us. I had missed it when it was on. Cheryl F

Mary,

Thank you so much for these ideas...sometimes we think about doing things and get side tracked for one reason or another.

Tonight I found myself very sad and crying and decided to get on the boards to see what was going on....and I found that this first post helped me tremendously.

I know what they say is true, that you can find yourself when you loose yourself in service, and that's what this board is, one of the ultimate services to others.

Thank you so much for your kindness and the tremendous help that you give others. Love, Cheryl F

Jayne,

OKC on March 12 at noon....my house! It would be so fun. We could even go to Bricktown, the Bombing site....we even have a canal with boats...probably not quite like San Antonio, but we're working on it, we could have a sleep over...I could get a wading pool and put it out back and we could dip our toes in it...what fun we could have in OKC! And you never know, maybe Istook will make it for lunch. I think maybe his wife has been over before..I just can't remember. I did go to his house and have cherry pie once. Long story. He has adorable kiddos...

Christy is going to be there, and maybe Canasa, and Michelle...you never know who'll show up!

So...maybe we'll see you then???? Love, Cheryl F

Hi,

I sent a letter to our Congressman Istook.

His office person called me today and said that she didn't think there was enough time to get an "official" day for this year. I'm not exactly sure how these things are done, so I asked her if they could work on one for at least next year.

I also invited Rep Istook & his wife to our luncheon. He's very busy I'm sure and don't expect that he's going to make it, but hey, who knows.

Has anyone else heard back from their senataors or reps? Cheryl F

That's interesting...please send me a copy too....cfarrar2@att.net thanks. Cheryl F