CAP. HILL DAY '05

[bella247]

THIS WAS POSTED BY PJLEARY...GIVE IT A READ!!!
Capitol Hill Day

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Hi,

I wanted to take a moment to point out that this coming CHD may be very important to all of us in ways we had not forseen prior to the recent news out of the U of Texas. We have all understood the vital need for more research funding for psoriasis and psoriatic arthritis for some time. However, in light of the recent developments, I believe it is important to re-double those efforts.

We have a great deal of power as a huge mass of the voting public. While last year was a great start with more than 35 individuals coming togeher to lobby Congress with the leadership and assistance of NPF, that is not nearly enough poeple to attract the kind of attention I believe we all want this disease to have.

Please stop and think what it would be like on Capitol Hill if we were just 300 strong. That is a clear message. How about a thousand? Hard to ignore us flaking in the hallowed halls then. We need to come together as a strong force this coming April and join with NPF to accomplish our legislative agenda. Never has it been more true that the squeaky wheel gets the grease.

So, please, everyone who can make a commitment to attend, post here. Likewise, if you need some help in getting there but are willing to attend, please post your concerns here.

Personally, I will be there. I hope to see you all there too.

This post is not a consideration for the contest that NPF is sponsoring. I hereby formally remove myself from any such consderation except as I might gift it to another.

[ouchyk]

"So, please, everyone who can make a commitment to attend, post here. Likewise, if you need some help in getting there but are willing to attend, please post your concerns here. "


I plan on being there for this year.

Here is the link for more info....http://www.psoriasis.org/resources/advocacy/capitol_hill_day.php?PHPSESSID=753462038943a0532f3 c8a3c2cf3b4f6

Karen

[PJ Leary]

This is a bump.

[ouchyk]

and another bump, thanks for starting the thread Bella & PJ.

[SandraJean]

Hi,

I just registered for the Capital Hills Days. Sounds really worthwhile to get involved. Hope we can make progress!! My husband will be coming with me, but he will not be attending the Capital Hill days. We are going to try to get a room at the Washington Terrace Hotel. They do have handicap rooms, so that is what we will need. I noticed there is a bus ride, will I have any trouble with my wheelchair or scooter? Looking forward to meeting everyone and helping out. We will probably only stay at the motel for one night, coming in on Sunday and checking out Monday. We will be staying in New Freedom, Pa. for a few days before and after. Thanks all---hope to see alot more people registering and attending!!

Sandy

[ouchyk]

A bump and a link. :)

http://www.psoriasis.org/forum/showpost.php?p=138607&postcount=151

[bugg]

hey yall!!
ok if i do trips to Mo.. well i know i can do this..its only a short 5/6 hr drive from Roanoke!!! i will make my registeraton within the next week... i think we have til March 11 2005, please correct me if im wrong yall... ive been to D.C. several times.. please let me know where everyone is staying!! and if anyone here or south of me would like to attend but dont want to drive the extra distance... if ya can make it to Roanoke i'll be more than glad to drive us from here!!! just a little extra info... reg is $50.. the date is APRIL 10/11 (Sunday and Monday) and if ya want to ride with me.. just let me know... PM or email me@
juliebugg65@cox.net
(like i said if i made a mistake please let me know!!)
julie

[ouchyk]

Awesome to hear that you'll be there Julie :D

A message from Bella;

" hope we have more people coming. Remember, LESS THAN $1 IS SPENT PER YEAR ON EACH PSORIASIS PATIENT. Think of ALL the money (esp. biologic people) you put down in ONE MONTH for a little relief. This is NOT exceptable. If not for yourself, do it for those who can't. "


http://www.psoriasis.org/resources/advocacy/chd_2005.php?PHPSESSID=f4017004d07859db11814ef203d aaa18

Karen :)

[SandraJean]

bump...........

[jshearer]

A heads up for everyone interested in Capitol Hill Day--we're having a Web chat about Capitol Hill Day on Tuesday, Feb 22nd at 4:00pm Pacific Time.

Our Web folks will be posting more info about this on the boards and the Web site, but I just found out the date and time, and wanted to let you guys know.

I'll be on the chat, and hope you will too.

Thanks,
Joey

[rosy3939]

Thanks Joey that great hopefully we will have lots of dialoge and convince others to attend.

[Karen_M]

For anyone who missed this evening's chat about Capitol Hill Day, you can read the transcript here:

http://www.psoriasis.org/community/chat/20050222.php

Thank you to all who participated!

Karen

[meghan_72]

Hi all you Advocates,

I'm very excited I'll be able to go the NPF Capital Hill Day this year!!

Sorry I couldn't make it yesterday for the chat. My doc appt took way longer than it should have.

I read the transcript and have a few things I can add based on my health advocacy experience. I've been a volunteer advocate on my Northern California Arthritis Foundation chapter Advocacy Committee for over 3 years now.

A few people were expressing frustration that the advocacy process takes time to accomplish. Anytime you speak to your representatives and their aides, you're competing with a large number of issues. That is just the way it is.

1. Our job as advocates is to have a long term committment to educating and affecting public policy specifically on our disease. This really is a long term committment. Our issue, psoriatic arthritis and psoriasis, are long-term diseases and until they find a cure, we are responsible for continuing the battle. In addition, we face the fact that both diseases are mysteries to a lot of people.

2. When newly beginning an advocacy group, it may feel like you're not making any changes. But after a couple of years of fairly constant communication with representatives, you'll find that they do get better at recognizing your group and your issue.

a. For example, the Arthritis Foundation reaches out to about 20 million people each year. Of that, only about 300-500 people are actively involved with advocacy around the country. There's a slightly larger number of people who are email/writing advocates. However, this year is the 4th or 5th year for their Advocacy Summit and we already have a bill introduced in the Senate and House. It's the Arthritis Preventol, Control, and Cure Act. It didn't pass last year but we've managed to have it reintroduced for 2005.
b. Last year (2004) the Northern California chapter wrote a proposal. Due to constant contact with one of the representatives, he's introduced it to the California legislative floor. That's a major thing. And it will probably be 2-3 years before it is passed.
c. The key in all of these accomplishments has been long-term and constant committment to educating and representing people with arthritis.

3. If you already know your representatives and have met with them personally, that certainly makes it easier to see them at other times. However, Capital Hill day is only 1 day. It's important to meet with your reps throughout the year when they're in town locally. Sometimes, they have town halls or something like that.

4. Get to know the health aides and Chiefs of Staff in the representatives offices on a federal and state/local level. They're the most important contacts for us as a disease group.

5. Finally, when you meet with someone you are trying to persuade (ie, reps, aides, Chief of Staff, etc), you need to be able to tell your personal story in a brief but emotionally impactful way. So that would be something really good to work on in preparation for this trip.

6. From my experience, it would be helpful to hire a lobbyist/firm for the NPF, but that takes $$$$. It is certainly something to work towards. It just might take some time to get the funding together. BUT we as volunteer advocates (patients and families) can still do a lot to get started and putting in an appearance is really super important.

Hope this is helpful to some of you!

-Meghan

[Microtrack]

Signed up today and looking forward to hearing more about the plans for the visit. I agree that much is hapening in our field and now is time to ask for a directed instruction in NIH budget.

[ouchyk]

bump........... :) Coming up soon!

:)

[ouchyk]

Bump...........8 days left to register... :) . Never too late to ask for a petition or write your congressmen and senators....under 1.00 per person given for our disease :mad: ...time to help ourselves!!!



Karen :)

[jshearer]

The registration deadline for Capitol Hill Day has been extended one week to March 18, 2005. I know several people are still making arrangements to see if they can make it to Washington, D.C. Hopefully, this extra week will help. Let me know if any of you have any questions. Unfortunately, the last day the Washington Terrace Hotel will guarantee reduced rates is still Friday, March 11. So make your reservations ASAP!

I will also be accepting applications for Capitol Hill Day scholarships (http://www.psoriasis.org/files/pdfs/advocacy/2005_chd_scholarship.pdf) up until March 18. However, get your scholarship applications in as soon as possible because scholarship money may run out before March 18.

The deadline for the Capitol Hill Day contest (http://www.psoriasis.org/resources/advocacy/chd_contest.php) is still Friday, March 11. Get your recruitment forms in by tomorrow. In the event that two people have recruited the same number of new Capitol Hill Day volunteers, the winner will be decided by whoever submitted their recruitment form first.

Thanks,
Joey

[SandraJean]

bump..................

[ouchyk]

Joey,

Thanks for extending the deadline, hopefully more members will join us.

[ouchyk]

Joey,

CHD was the most wonderful experience...I would love to see the numbers doubled again next year. What a truly AMAZING group of people. It gave me more hope than I have had in a long time that we will see P & PA researched to find better treatments & a cure.

I have a whole new perspective on what we as a NPF membership community can do by spending time with our representatives telling our stories and asking to have our hard earned tax dollars put to work for us. Also new light was shed on what goes on at the NPF there is so much more than the message boards!

It was a positive experience in every office that I visited Many thanks again Steve for your help in Rep. Lynch's office & to everyone for being so friendly and supportive. What a great team.

I look forward to helping where I can in advocacy, it doesn't end here. Being pro-active is now part of my treatment plan!

Karen :)

[ouchyk]

Hi,

At the top of this section you will find a Sticky " Does YOUR U.S. Rep Support Psoriasis Research? "

We need YOU to call or write your representatives and have them sign onto this important letter for further funding for research! Research leads to better treatments and a cure is not out of the realm of possiblities.

The deadline is fast approaching.

Let's help ourselves.


Karen