45,686 members and not even 1% will come to CHD???

[makeitgoaway]

Where is the sence of urgency?

[RichJ]

hi steve
it bothers me that i can't go. i wish i could. i did the best i could buy sending the letter form the thread. i wish alot would go that can.

have a good day all

richard

[misales]

i did the best i could buy sending the letter form the thread. i wish alot would go that can.

have a good day all

richard

There are a lot of logistics for me to be able to make this event. Outside of just getting the time off, thinking of my child and wife and even elderly parents concerns, and the extra cost it is a difficult pill to swallow this year. However, I think Rich is right on the money here. Sending letters and or making phone calls or getting on the email is something we all can do and DOES make a difference.

Now I hope that our support group can do enough work this coming year that we are able to send one or all of us from Michigan next year, but, for this year I personally will do my best to do what I can here with letters, etc. and challenge my local friends here to do the same.

ALSO....although this the "official" capital hill day, the governement works 24/7/365 and "capital hill day" can be every day.

I have never been to Washington DC but hope to go someday and I'm sure when I go I will make sure to stop into my local reps offices.

I have know since grade school that each state has two senators. I did some checking on the internet and the two michigan state senators have multiple offices across the state, including offices in the city I live in about 15 minutes from my house. So I am going to make it a point to maybe hand deliver my "letters" to their offices. I've never had a need in my life to visit a reps office in the past.

I think a lot of good things are happening on "chd".

[jshearer]

I have know since grade school that each state has two senators. I did some checking on the internet and the two michigan state senators have multiple offices across the state, including offices in the city I live in about 15 minutes from my house. So I am going to make it a point to maybe hand deliver my "letters" to their offices.

This is a terrific idea. Every senator and US representative has offices in his/her home district. Visit www.house.gov and www.senate.gov to identify the Members of Congress who represent you and find the addresses of the "district offices" in your community.

[misales]

I will just have to make my visit quick and to the point. All I have to say is that I'm glad I'm not a resident of New York and Mitch...if Carl Levin had the cure, I would not get in bed with him! I can assure you of that.

[MelissaLynn]

not even .5%, Steve.



Whats that saying about the lord helps those that helps themselves.
Yeah-

Well, Ill do what I can anyway... no one thing is going to do it- and no one person will either. It takes a cummulitave voice and a cummulitave cause to raise awareness... so that others may be heard and seen and understood where there was once ignorance and-
well, you get the idea.
Those that get it- get it
the rest

Well, the rest are just as deserving as anyone else....
Still- dont think your letter writing wont make a difference. It WILL. It DOES
Please write a letter if you cant be heard and seen at CHD- make your voice heard and lend support to the cause

xoxo
ML

[slowe]

For me the problem is also #1 - money & #2 - getting time off of work. I just found out that to get my teeth fixed, it's going to cost me around $2,000 so it's out of the question for me to even think about going to chd.

But Brad gave me an idea, I live in Lansing, MI - the state capitol. I'm going to find out where the reps offices here in Lansing are and do like Brad suggested, I'll drop them off in person. I'm also going to have my dh, parents, sister, nieces & nephews, basically my entire family write to their reps and tell them everything I've been thru because of P & PA.

So even though I won't be going to chd, I will be doing my part.

[makeitgoaway]

For me the problem is also #1 - money & #2 - getting time off of work. I just found out that to get my teeth fixed, it's going to cost me around $2,000 so it's out of the question for me to even think about going to chd.

But Brad gave me an idea, I live in Lansing, MI - the state capitol. I'm going to find out where the reps offices here in Lansing are and do like Brad suggested, I'll drop them off in person. I'm also going to have my dh, parents, sister, nieces & nephews, basically my entire family write to their reps and tell them everything I've been thru because of P & PA.

So even though I won't be going to chd, I will be doing my part.

Sue-

That is wonderful that you are willing to pitch in whatever way you can. If we could find a way to get all 44K plus members to just help a little bit, our voice would be so strong!

[khorath]

My letters are typed and ready to go out in tomorrow's mail.

I wish I could go to D.C....

[oakrai42]

Think about this though... there's that many members and how many even want to discuss their experiences on these message boards... there's a ton of readers and not nearly as many writers... people need to deal with this in their own way.

Some people are still just trying to cope with the fact that they have to deal with this disease... not everyone is ready to pick up a sword and fight just yet. Everyone can push the issue through the mail (snail mail & email)... but not everyone may want to show their faces yet....

...and this is of course not taking into consideration financial situations and logistics around getting to WDC. Why not everyone send in a picture of their worst plaque and those who go to WDC can throw them on each senators desk... then shake out some flakes on top of it. I think that would send a message.

-Steve

[grannyfranny]

Steve, that is a good idea. I will send pictures of my feet. They are gross, make 'em wake up!

[oakrai42]

Another thought... If you're going to CHD, why not get a member list from the NPF (just usernames I guess) and say:

"look at this Senator blah blah blah... Forty Five thousand of your fellow citizens are members... while there's millions of sufferers... with only 0.5% showing up to CHD. That says something different than they don't care or can't come. It says that their afraid to come out of the shadows.. because there isn't enough being done to help them... treatments... public education... etc... etc... etc... etc... DO SOMETHING ABOUT IT"

Then start throwing punches :) Just kidding.. you get the idea though...

-Steve

[PJ Leary]

Hi Steve,

I admit that I am baffled as you are. However, I know that we all have our limitations. I do agree that those who cannot be there in person but can access this forum have an obligation to write, and to do it well.

Personally, I do both, I write and then I show up. I hope to see many more doing one or both.

Thanks for keeping this at the top of the board.

[seedoubleyou]

Some people are still just trying to cope with the fact that they have to deal with this disease... not everyone is ready to pick up a sword and fight just yet.


Bravo, Steve. Thank you.

[Patchsigns]

Steve,

Continue to rally the troops, Steve.

I've written my letters but, I'd like to do more...

Joey, can we start a thread or something where we would type in our name and our state and have thousands of names signed on as a petition that we would like to see increased funding...??? Is it doable...??? Will it help...???

I would venture to say that given the amount of people listed as members, and those of us not going to CHD, I would be pretty sure that a majority of them don't even write letters to their senators and representatives.

But when funding gets cut for P and for PA, a great majority of them, will complain about it.

I would like to help beyond the letter-writing...

Joe