Capitol Hill day on May 17th

[gumbygirl]

Is anyone going to go to Capitol Hill Day in May? If I can rearrange my other trip a bit earlier, I would like to attend this. Is there any one else that is going or thinking about going? I have spoken with Robert at the NPF several times and I think that it is important for us to have a presence there. We all know how horrible this disease is and if we can make a diffference, no matter how little, it is worth it.

I know some people can't make it due to work schedules, monetary reasons, previous engagements, etc. However, if you can't make it to Washington, perhaps you can write a letter to your congressman with your story, donate frequent flyer miles to someone who would like to go but can't, etc. I'm not sure exactly what they are in need of but surely we can all do our part, no matter how little it may be.

So, not only do I want to know if people are going for selfish reasons (like who will have a chocolate martini with me) but I want to know as a fellower "P" person.

[BobO]

Hello gumbygirl,

I would attend Capitol Hill Day in a heartbeat if it was fall or winter. Although the campaign is important and I love DC, my spirit is telling me not to be away from Michigan in the most beautiful part of the summer. We have a deadline of April 15 to register so I will continue to let my advocacy spirit keep battling it out with my recreational spirit. We wait so long for summer to arrive in Michigan that we covet every minute of it.

Since you have spoken with Robert, do you know if the group of NPF Advocates will have pre-arranged appointments with the senators and congressmen, or will our contacts be catch-as-catch-can?

Bob

[rosy3939]

I have registered and will be attending this event. Any time we can be a present to help infulence the decision makers I tink it behoves us to participate.

It is a good opportunity to meet with you representative if you don't already know them and more importantly to meet with there staff the one who actually do anything

If you can make it. I erduge everyone to attend. If got you must write and lobby form local reps with phone calls


Mitch

[gumbygirl]

Rappin BobO... Hi, it's Rhonda. How are you doing??? I met you at the convention. (I was absent from the boards for a while - Also, I changed my screen name.)

Yes, I have been told that each person will definatly have time with either their Congressman and/or staff.

I hope that you can make it. I'm looking forward to another rap...

[jshearer]

BobO,

The Foundation will set up appointments with the two Senate offices and single House office for each Capitol Hill Day participant. We're trying to make this day as "user friendly" as possible. No previous lobbying or political experience necessary. In fact, we really want to get new people involved.

We're creating a few important bulleted "talking points" for people, based on the suggestions we've received from members about our legislative agenda. Having a unified message will give us the most bang for our buck.

We need as many people as possible to sign up to maximize the power of our message. I'm already receiving registration forms from folks. The registration deadline is April 15.

For more information, including the registration form, please visit: http://www.psoriasis.org/resources/advocacy/capitol_hill_day.php

Thanks everybody. We hope to see you in DC!

Joey Shearer
Advocacy Coordinator
National Psoriasis Foundation
advocacy@psoriasis.org

[BobO]

Hello Ronnie-D !!!

Nice to talk to you again!! I have been just fine and dandy, Thank You! During my making plans for San Diego I have thought about you often.

OK then, Joey told me what the line-up is and I have reviewed the Registration Form. I realize that this is a very important endeavor and will work towards a positive decision by April 15.

Keeping the Faith,

Bobby O

[chaimFL]

A rap in front of congress would be classic......I say you go for it Bobbie! Perhaps the rap first and then the disertation....gotta lighten the mood first.

[BobO]

HaHaHaHa Chaim, Very Funny, rapping would only lend itself to influencing an agenda of an "unhealthy" or "unbalanced" immune system.

But since I will be advocating noni juice, wheatgrass spray, turmeric, oregano, and peppers & eggplants leaking out our holey intestines, not to mention - the importance of improving our collective intestinal health!!!!! . . . why my boy, I must maintain an unmistakable air of credibility about me hahahahahahaha heeeeeeeeeeeeee.

Running joke, only kidding, it's only a joke!

Bobby - "what cure hasn't come from actual science and real research" - O

[rosy3939]

It ben some time sinse anyone has posted to this thread. I am wondering if anyone is going to Washington on the 16-17.

It behoves us all to take a stand and make out present felt. We all complain about lack of insurance coverage. That ionsurance companies and not doctor are prescribing treatment options. We need to insure the servere psoriasis and PA are covered under disability laws. We need to educate congress and the American people of the nature of this disease.

It it fun posting picture and the like but what are we doing to help our self. We need to be our own avocates. Sitting on our duffs will not improve our plight. We need to be heard and in being heard we can help shape policy that will benifit us in the long run.

I know everone can't afford to make the trip or even take the time out of the busy schedule to be there. But for all off us not to a least write and phone our congressman and sentors is a sin.

But I think we need to take it a step furter. We must aslo pressure on state and local officals too. Individual state do set policies and standards. They to as elected officals can be brought to put pressure on otehr within the political parties.

If you can't be in Washington, then your homework assigment to to write and call your elected officals. There is no excuse not to.

NPF said they will be posting samples of where they would like to write and say. Please when that is posted put it in your own word and send it. Nothing turns off an elected offical more that form letter, cards and stupid petitions. They don't wotk!

Also I would remind the NPF if they wish a writing campaign to coinside with our apperance on Capitol Hill then these letters and cards must be sent at least two to three week in advance of May 16 & 17. All federal mail going to the President or Congress now gets irraidated and this process takes time. E-mail is much more effective.

I would hope NPF will compile a list of all Congressmen and Senate members and their mail and email addresss, and phone numbers, both washington and district offices. These list are available and should be posted for all members to take advantage of.

I urge all who can, to be there in Washington DC and let NPF put faces to this dreaded disease. Our voices need to be heard and faces seen!

Mitch Rosenberg


[ IF YOU CAN'T MAKE IT AND YOU DON'T WRITE AND CALL, SHAME ON YOU!

PS copies of all letter sent to the elected offical should sent to NPF, and remember you must sign and post you full name and address or it will be tossed into the waste basket.

[MikeK]

Originally posted by rosy3939
I would hope NPF will compile a list of all Congressmen and Senate members and their mail and email addresss, and phone numbers, both washington and district offices. These list are available and should be posted for all members to take advantage of. You can find your congressperson's contract info by using this link: http://www.house.gov/. (You can enter your zip code in the "find you representative feature -- which is near the top left corner of the screen.) You can find you Senator by using this link: http://www.senate.gov/general/contact_information/senators_cfm.cfm.

Hope this helps.

Mike

[rosy3939]

Mike I know who mine are and where to reach them. Also know more importantly ther cheif-of- taff and where to get hold of them.

But the list would be helpful because not only sending to you represenative but to other key players on various committees and sub committees. A complete list is critical and there are more than just the three people who represent you that need to be contacted.

And if you can elimate the need for search and make it as simple as possible then maybe more people will be inclined to write.

Mitch

[bella247]

i have been considering going. I would love to go and if money is up to par, i will be there!

Rhonda, i wanted to ask you about the convention so i will PM you soon!

Rapper Bob, we could use a ditty to get us going!!!

Take care and smile

Bella

[gumbygirl]

I sent an email several days ago to NPF so I am assuming that this will be addressed (since I noticed that there is now a letter on the site) I'll just pass briefly pass this along. Both the Senate and the House have websites. From these sites, you can put in your zip code and it automatically tells you who your Congressman are. From there, you can link to their websites and send them a direct email. It is extremely easy do do. (I'm not going to post any links because I don't want to take all of Mike's fun away!)

On the login page, you will now have the goals of what we are tying to acomplish. PLEASE, PLEASE contact not only your Congressman but the members of the subcommities (which you will also find easily online).

Bella - please try to go, you can stay in my room if you want so you can cut down on expenses. I'm poor right now so I'm not sure if I'm staying at the recomended hotel but I will let you know.

[rosy3939]

This needed to be bumped to the top of the board. I hope there are many more people who will going to Washington. It is in our own best intrest.

[FlakeyMatt]

Bumpin' up and trying to arrnage to go


Would love to get there but I need to juggle a few things I will be getting back from a long trip just prior and don't know if I will be in any shape to sit before Congress


Will keep you posted

[rosy3939]

IS ANYONE COMING?


We spend hours and hours on these boards. Sharing, venting and supporting one another. We now have a chance to make a difference. A chance to have our voices heard. A chance to start effecting governmental policies and proceedures that will help us better cope with this dreaded disease. IT IS TIME WE ARE PROACTIVE AND NOT SIT BACK AND SAY, 'POOR ME'.

Are you coming, if not are you going write, e-mail, fax your Congressman and Senators?

STAND UP AND BE COUNTED


Looking forward to meeting many of my fellow sufferers in Washington.


BEING THERE IF YOU CAN, WRITING IF YOU CAN'T. THIS IS AS IMPORTANT AS APPLYING YOUR MEDS.

[khorath]

I can't go to Washington, but I am attempting to invite our legislators (state and federal) to our May support group meeting. If I can't go to Congress, I'll see if I can get Congress to come to me. :D

I'll let you know how successful (or not) I am.....

Kevin

[PJ Leary]

Oh alright, already!

I will be there. Mitch, please pm me the hotel info again, I'll stay where you are staying and we can commute in and back. One night and day is all I have then, just there for the assault on Capitol Hill, then home to NC after.

I agree, I will speak up rather than shut up.

See you there.

[bella247]

Due to recent money issues, i cannot go. if by some chance i can go, i will be there.

Good luck to those who attend, it looks like we have a strong group representing us!!

Take care and smile

Bella

[makeitgoaway]

Is there a formal agenda (not a mssion) for that day?

[rosy3939]

Yes there is Steve. If you go to the front page that is a "National Psoriasis Foundation 2004 Legislative Agenda", you need Adobe to read and print it out. But the mian points are:


Increase understanding of psoriasis and psoriatic arthritis

Increase research on psoriasis and psoriatic arthritis

Increaing the number of physicians and scientists treating and studying these diseases.

And not stated but most importantly putting voters faces to these diseases.

I strongly suggest that everyone downlad the Legislative Agenda it is an important document and a new approach to our wonderful organization.

Hope you can make it

[makeitgoaway]

I meant, are there appointments set up? With who, when etc.....

[jshearer]

I'd like to thank everyone on this thread for spreading the word about Capitol Hill Day. We've gotten a big response, especially considering this is our first time bringing members and Foundation staff together to meet with Senators and Representatives.

Please visit http://www.psoriasis.org/resources/advocacy/capitol_hill_day.php to sign up. The registration deadline is April 15.

If you have any questions, please email me at advocacy@psoriasis.org or call 800.723.9166 ext. 407.

Thanks everybody!

Joey Shearer
Advocacy Coordinator
National Psoriasis Foundation

[rosy3939]

Joey. I think the responce to these post as been piss poor at best but a lot of the balme needs to be put squarely on the shoulders of the NPF. Outside of the registration form and the adgenda for Capitol day the NPF has not given marching order to any of the 33000 plus members. You have not articulated our adgenda and position and the importance of incorpoating your political adgenda.

When is the NPF going to start a tread about the importance of the political adgeda, not a thread by Gumbygirl or Flakeymatt.

When are you going to post sample letters for members to write to their represenatives. Giving examples of content and disired effect.

When are you going to inform your members when to start writing and to whom else beside there represenative to write too .

Why hasn't the NPF had a community chat night so these ideas and thought can be share in a real time format?

Where is a open letter from our president MS. Zimmerman urging evryone to be part of this endevor and conveying its importance.

50, 100, 200 people may be marching off to Washington DC but what about the rest of the NPF membership. What their adgenda.What do they have to do?.

To those who read these posts you have a responsibility to be involved. It nice when all else fails to post a kitty, its fun to tell jokes and laugh ( God know I have taken part it that too). It nice to repond to your favorite uplifting song, but what the HELL ARE YOU GOING TO DO FOR YOURSELF!

"PEPOLE GET OFF YOUR DUFFS"

Mitch Rosenberg
****** of NPF member






[SIZE=4]

[bella247]

bump......

[jshearer]

Over the past month or so, I've been working on updating the content of the advocacy pages on www.psoriasis.org. Last week they went live. There are still changes coming, but this was a big update with lots of edited content and a few new pieces. Check it out here: http://www.psoriasis.org/resources/advocacy/

One of the new sections we've added is an "Action Alert" section. For all those people who want to get involved and DO something, this is your page. This is where I've posted instructions on how to contact congress (among other things), including a sample letter. When important, new issues come up that warrant action by members of the psoriasis community, this is where you'll find them: http://www.psoriasis.org/resources/advocacy/take_action.php

Within the next week or two, we will be pushing some sort of letter writing effort, so please stay tuned...

Joey Shearer
Advocacy Coordinator
National Psoriasis Foundation

PS-And sign up for Capitol Hill Day: http://www.psoriasis.org/resources/advocacy/capitol_hill_day.php

[bella247]

last day is here....good luck!

[jshearer]

Today is the Day. If you plan on joining us in Washington, DC, but haven't mailed or faxed your registration form, please do so today. If you need an extra day or two, or have any other questions please call me at 800.723.9166 ext.407 or email advocacy@psoriasis.org

Visit http://www.psoriasis.org/resources/advocacy/capitol_hill_day.php for all the details.

Thanks,
Joey Shearer
Advocacy Coordinator
National Psoriasis Foundation

[rosy3939]

REGERSTRATION MAY BE CLOSED BUT THE LETTER WRITING CAMPAGIN SHOULD BE JUST BEGINING.

IF WE HAVE OVER 33,000 MEMBER AND EACH ONE WORTE TO THEIR ELECTIVE OFFICALS THAT WOULD BE ALMOST 100,00 PICES OF MAIL. ON VOICE WOULD BE HEARD LOUD AND CLEAR.

WE NEED TO WRITE THOSE LETTERS AND MAKE YOUR YOU GIVE YOU NAME AND ADDRESS AND LIKE THE NPF SAYS REQUEST A RETURN ANSWER TO YOU CORESPONDENCE.

THIS ONE IS EASY. THERE SHOULD BE NO EXCUSES!

[FrogFritter]

I tried very hard to be able to make it to DC.
I was unable to find someone to cover for me
at work.

I did however send letters to Hillary Clinton and
Charles Schumer. I hope everyone will take a
few moments to send an email or letter to your
Senators.

Amy

[FlakeyMatt]

I am writing letters and going to DC "The District" may never be the same 'cause FlakeyMatt is coming to town!


FlakeyMatt