Capitol Hill Day

[PJ Leary]

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.

[Tooth]

I love plans of action. Unfortunately I am in Britain and am not really prepared to fly over, lol. Can someone provide me with information on whether there is public donating for psoriasis research?

[rosy3939]

Hi PJ.

You are 100% right. This is the year to push forward our (the NPF) adgenda. Last year we layed the ground work this year we need to expand our base. Thirty five was a good begining but good enough.

This year although the adgenda has not been put forth yet we need to meet with the various comittee member who control the money, Appropriation, Health & Human Serivces, and any and all sub-committes that effect research, insurance refrom etc. This must happen and for happen we need people to physical be in Washington!

Personally expensive, YES.
Big comitment of time, YES.

but what are the gains,

THE EDUCTAION OF OUR ELECTED OFFICALS OF THE NON-COSMETIC NATURE OF THIS DISEASE.

THE FIGHT TO GET ADDITIONAL FUNDING FOR RESEARCH FOR BOTH PSORAISIS AND PSORIATIC ARTHRITIS.

THE CHANCE TO EFFECT REAL INSURANCE REFORNM.

THE CHANCE TO MEET OTHER SUFFERERS AND THE LEADERSHIP OF THE NPF.

IT A CHANCE TO STOP FEELING SORRY FOR YOURSELVES AND BECOME PROACTIVE IN THE FIGHT AGAINST YOUR DISEASE.

The list of benefits goes on and on. You got to be there!

NOW IS THE TIME!
NO BULL, NO EXCUSES!
YOU HAVE THE RIGHT TO CRITISIZE IF YOU HAVE THE HEART TO HELP

[slowe]

I would love to go but can't afford it. I might be able to come up with airfare, but as far as getting a hotel room goes, I couldn't do it. Any suggestions?

[Raynard_the_Fox]

I will be there.

As I see it the NPF hold 2 major events a year and this is one of them. If you are unfaimliar with what it is or just want more info about it as well as how it went last year here is a LINK (http://www.psoriasis.org/resources/advocacy/capitol_hill_day.php?PHPSESSID=3fd3ec87388ec28db8d 7c78ddace9ccf) off the NPF main page.

The more people we get to go the better. Esp. those people who's Represenitves sit on Commitee's and sub-commitee's. All of these research bills start there and we need to push them to get the ball rolling. I know off the top of my Head that Senator Kennedy (MA) introduced a bill some time this year called "Arthritis Prevention, Control, and Cure Act of 2004" and that this Act could be used to increase research into PA. There are more and I will look them up and post more info on them later. but the point is we need to write are reps letting them know that you like them to support such bills once they come to the floor to vote or to have them pushed through commitee as quickly as possable.

If you dont know who your reps. are in the House and Senate you can look them up from this LINK (http://www.psoriasis.org/resources/advocacy/contact_congress.php) as well as find sample letters and other tools and info for getting in contact with and getting the message accross to them. I know not all can make the trip to D.C. but it only takes a few minutes an envlope and a stamp to have your voice be heard. Some of you may have gotten new reps. since the election is now over. Write them just to get started so that they or atleast there staff knows the word Psoriasis. If your rep. won re-election write them congradulating them on re-election and just let them know you hope they continue to fight for more NIH and NIAMS funding.

I know its very easy to feel that one voice will not make big diffrence. But just like a peice of straw has next to no mesurable weight. If you throw enough of it on the cambles back it will break. Its the same here alone it may not be much but if we all pile on we will eventualy break the beast down.

Like the sentment put forth in this THREAD (http://www.psoriasis.org/forum/showthread.php?t=10015) doing this isnt just about ones own suffering. Personaly I am tried of logging on here and seeing a Mother who has an infant that is covered, Or the parent who's small child no longer wants to go to school or outside anymore because of there P, or the teenager who has it hard enough trying to figure out what life is all about has this to content with as well. or the person in there 20's and 30's who in the prime of there life no longer have the energy or have to spend countless hours dealing with achy joints already. or older ones that would rather be spending the time and energy on there faimilies are stuck dealing with this. I am tired of it and the only way I am not going to see things like that again is by finding the cure. and we are only going to get there by pushing for more research and that is what C-hill day is about for me. Its so that one day I will only be coming here to chat and laugh with my friends and that the stories of pain and suffering due to P and PA being a thing of the past.

I generally dont like getting this preachy, however this is important. I missed it last year because I didnt even know about it until the last minute. And while it is getting more attention this year then last and that is a great thing it still does not seem to be getting the attention it should considering the importance of it. the other things the NPF does are important and fun too. believe me come Augest Boston will not have partied like this since they threw the tea in the harbor. But like all things there's a time to party and a time to get down to work.

See you all there,
David

[MikeK]

Hi Sue,

Some of us stayed at the Kellogg Conference Hotel at Gallaudet University. Although the rates that we paid were all over the map (I think that it depended on when the rooms were booked), it was a cheaper alternative to other Washington, DC area hotels. (Edit: here's a link: http://www.gukcc.com/). They have a free shuttle that takes you to and from downtown Washington so getting around is no problem. I'm probably going to stay there again. If you double up on a room, you can split the costs. I went to Chicago in June and was able to get a decent rate on one of those online services. (I need to check my credit card statement, because I forgot which one I used. I'll do a follow-up post with the info. Brad just got a decent rate here in New Jersey using www.Priceline.com. If you physically can't be there, then you can be there in spirit, by writting letters to Pres. Bush and to your Senators and Representative.

Mike

[misales]

Well every state has a capital hill, or at least a capital. Hey Sue, maybe we can go to Lansing that day for Lunch or have our meeting by you. I know a state rep and maybe we can meet someone there to see what we can do to help in our state.

You know, it is true that a lot of us cannot afford to go to Washington, or even Boston. It's not just money it's also taking time away from family, work, etc..

DO NOT UNDERESTIMATE THE POWER OF STATE GOVERNMENT

In fact, in my case, the State of Michigan played a big role in my clearance. The University of Michigan is a State University. Also, when I was filing grievances they were ultimately headed to the state insurance commission.

So, if you can't go. Write a letter or pay a visit to your local politician.

Lets March on Lansing Sue. I haven't been to the captial building in a long time.

[floridian]

I just read that at one time, psoriasis was equated with leprosy, and the church would actually declare people with psoriasis to be dead and expell them from the village! I guess things have improved a little since then, but anything that leads to better education and public policy is a Good Thing. Thanks to the ladies and gentleman who are taking part in this effort.

[kkellogg]

Fox:

Excellent post, thank you. I will be there.

Krista

PS - Any one know when the agenda will be published? Can we do some pre-planning here on the boards or in another listserve?

[rosy3939]

Good Krista glad you are going to get to Washington. It was a great event last year and we need to make it even bettter this year!

We need as many people as possible to be knocking on our reps doors. There are over 600 reps and senators that need to be visited. Now is the time to organize.

Mitch

[slowe]

Hmm, march on Lansing? I'm not sure about that one Brad. Don't mind me, I'm desperate to get away from the hubby & kids for a while, that's why I'd love to go to DC. :D

How about this Brad, if I'm unable to get the $$ together to go the DC, marching on Lansing would be fine with me :)

[misales]

We need as many people as possible to be knocking on our reps doors. There are over 600 reps and senators that need to be visited. Now is the time to organize.

Mitch

They are your representatives in your states. So if you can't make the trip a letter or email even to your local representative would even help. Right on the money Mitch.

And Sue, that sounds good, we still don't have a time/place set for our next meeting.

[slowe]

Brad, sounds good to me, I'll let you know what happens.

[mdgirl]

Oh you all count me in. I am 10 minutes from DC. I wish I had enough room to put everyone up, but I have a very small house. :( I am so looking forward to this. I will do anything to help the cause. P is a very serious disease that needs to be heard.

Diane

[Raynard_the_Fox]

As some are saying planning and Money are an issue. this is why making the plans as early as possable are better. Things like airfare and the such usually can be found cheaper the further in advance that you make them.

I know April seems a long way off. but I sure your all as busy as I am and it will sneak up on us quicker then we think.

-David

[JodyGK]

I will be there. I have already budgeted and set aside the dates for this event. Airfare from S.F. will be high, but if I have to sell a kidney, I'll be there.

Krista, I love your idea of getting a discussion going on planning this event. I did find out that the Foundation has negotiated a group hotel discount that will be announced in the Jan/Feb Advance, and they'll be extending that discount for a few days before and after the event for those of us who want to hang around a bit.

Jody

[MikeK]

I did find out that the Foundation has negotiated a group hotel discount that will be announced in the Jan/Feb Advance, and they'll be extending that discount for a few days before and after the event for those of us who want to hang around a bit.Even though the rates that we paid were all over the map, the Kellogg Conference Hotel at Gallaudet University (http://www.gukcc.com/) was a cheaper option that the NPF discounted rate for last year's Capital Hill Day. You also might be able to get a better deal (although you may have to pay in advance) if you use one of those online services such as http://www.travelocity.com/ or www.priceline.com.

Mike

[PJ Leary]

Hi Guys & Gals,

Glad to see the responses so far! Sue, I am open to having a female room mate , but will only be staying one night. It is a crazy time for me to take off from work, and I have to head right back to NC at the end of the day.

I stayed at the Kellog last year, and will most likely stay there again, like Mike. Planning ahead will save lots of $. I am also a big fan of priceline and also lowest fare, have saved oodles of money using them, especially for advance purchases.

Since DC is about a four hour ride from Raleigh, I am planning to drive again in '05. Anypne who wants to catch a ride with me from my area is most welcome.

Keep the responses coming!

[RichJ]

hello all
i will check with robin to make sure that she has no problem with me going.

have a good day all

richard

[bella247]

here is why i go.........and will continue to go, until we get a cure.

[MelissaLynn]

Capitol Hill Day 2005- What is the exact date, please? Did I miss the post that said it?

Ive been thinking for a long time about this day. Since I missed last year because I was just coming back from MN., I have had plans to make this one.
Those that know me (and many do) Know that I have some contributions to make to help increase the numbers attending. (small scale)
One thing I think is important once I get there is bringing my pictures with me. My skin looks pretty great right now and I dont know how much of an impactact I can make looking brigt eyes and bushy-tailed, SO! I am bringing pictures of my Psoriasis at its worst. I have also considered bringing a print out of this years End of year statement from my pharmacy to show how much I spent on medications for my Psoriasis. These are tangible items that can show what my body has been through. To look at me now, I look pretty decent and high functioning. Those Reps need to understand what a person must go through to get to a decent level of function with P and PA.
So, yes. I will be there.
Some things to think about- that slammed me like a ton of bricks the other night as I watched television late one night last week is that The White House spent over 4 million dollars on decorations for the Holidays. They have 41 live trees in the White House this year- more than twice the amount that has ever been. They employed EVERY worker, from plumber to electrician to cooks to get the house "ready" They mailed out over 2 million Christmas cards (do the math) Here is a link to see a little of what Washington is willing to spend for a Christian tradition. It is beautiful, please dont think I dont think it does- BUT its extravagant and the tax payers are paying to chop down living trees and hire private artisans to design White House Christmas Cards and write White House Story Books.
Im not going to choose this as a battle when I visit with them, I am going to use it as my own personal mindset to know that THERE ARE funds available for our cause! Please look at this link.
HERE IS AN EXCERPT FROM THE WHITE HOUSE PAGE

White House 2004 Holiday Theme Is "A Season of Merriment and Melody"




Mrs. Laura Bush announced today "A Season of Merriment and Melody" as the theme for the 2004 holiday season at the White House. Combining the magic of the holidays with the popular songs of the season, the theme celebrates melodies that have brought joy to Americans for generations.

Since July, the White House residence staff has designed and crafted vignettes of holiday songs including Frosty the Snowman, Rudolph The Red-Nosed Reindeer and Jingle Bells. The vignettes will be displayed on mantels and pier tables throughout the White House, while more than 41 flocked trees will create a winter wonderland on the State Floor.
In keeping with tradition, the official White House Christmas tree adorns the Blue Room. The 18 foot Noble Fir was grown by John and Carol Tillman of Rochester, Washington. The White House Christmas tree is decorated with 350 musical instrument ornaments painted by the members of the Society of Decorative Painters. Every state has a painter represented on the tree.

Each guest visiting the White House will receive a tour book illustrated by Elise Primavera from New Jersey. The illustrations feature President and Mrs. Bush's pets Barney and Willie enjoying the sounds of the season at the White House. (TOUR THAT BOOK, its amazing!)
http://www.whitehouse.gov/news/releases/2004/12/20041202-9.html#

Here is a virtual Tour. I think its nice to see, but people need to remember the exorbitance we spend at the most needless level. I didnt feel to merry looking at this. I felt sick.
http://www.whitehouse.gov/holiday/eastroom.html

Hopefully the homeless and the hungry dont see this. They might feel sick too.

Having said all that- Yeah, Ill be there. Congress Im sure would be glad to see REAL people behind the money they are allotting for research.

Best,
MelissaLynn

[bella247]

More than five million Americans need your help
The National Psoriasis Foundation will host our second annual Capitol Hill Day April 10-11, 2005 in Washington, D.C. The psoriasis community needs you to be there!



What is Capitol Hill Day?

You visit the offices of your U.S. Representatives and Senators to tell them and their staff about psoriasis, psoriatic arthritis, and the importance of increasing funding for research and ensuring good access to medical care. You build personal and political connections that will help more than 5 million American men, women and children diagnosed with psoriasis and psoriatic arthritis.

Why should you go?

It's important! Over the last 10 years, Congressional funding of the National Institutes of Health has increased 148 percent, while psoriasis research funding has decreased 13 percent. You will make a difference! In 2004, volunteers met with over 40 Congressional offices. It's fun! Connect with like-minded Foundation volunteers from all around the country. It's easy! No experience is necessary and the Foundation schedules your appointments. In 2005 we may find the Congressional "champion" we need to really advance our cause!

[sparklingfire]

At this point it looks like I'll be there. As soon as plans are definitive and I can make travel arrangements, it will be more definite.

Jen :)

[MrsSooners74]

I will BE THERE FOR SURE!!!! and I think Rob may attend as well!!!!!

[slowe]

If I am able to go, I plan on wearing short sleeves and a skirt and no makeup so they can see just how disfiguring this disease is. Mind you, with no makeup, I'm very likely to scare the hell out of people.

[babzee23]

count me in! ok folks, this is something everyone should really make time for, and the morer the merrier, literally. Bring friends family, and anyone whose life is affected with this disease. People are spending millions on researching breast implants, and lip injections and botox. :eek: ....(at least thats what my derm;s office makes me feel)..., while our funding is decreasing! thats makes my skin crawl, ...and flake,,,,,, lets go to DC and make some noise

[babzee23]

...........JUST BUMPING THIS UP :)

[Raynard_the_Fox]

yeah, there has to be more people that are going, or atleast want to go.

[SandraJean]

Hi,

I'm interested in going and I live outside of Rochester, NY. I have both p and pa (in a wheelchair). My mother in law is in a retirement home in Shrewsbury, Penna. (about 5 miles from the Maryland boarder). My husband and I thought maybe we could go down to visit her and stay in the motel we stay in there and drive to Capital Hill for Monday. We figured it would be about 45 minute drive or a little more. My husband is in a wheelchair also and we would have to make sure we could find handicap parking and accessiablity. I think it would be great to go and discuss the benefits of research and help for people like us with p and pa. If anyone knows more information about the upcoming events and the abilities of us going ok, let me know. Thanks!!!
Sandy
ps---my husband has a neuromuscular disorder, not pa, but would like to come too

[PJ Leary]

Hi Sandrajean,

Come along and we'll help with the handicapped issues. There are always more than enough of us to help with those issues when we have a gathering, the online group will most certainly help you and your husband with whatever you need.

Thank you for being willing to make the trip and come to support the NPF and all of us!

I can tell you now that the Kellog Center is very handicap friendly, so it might be a good place for you and your DH if you need to stay overnight in DC.

I am looking forward to meeting you there.

[littleangel]

So i just printed out sample letters and the addresses that i would send them to.
today, instead of listening to my 2 hour italian lecture. i'm going to start writing letters :D

i'll see you all at CHD!

[Raynard_the_Fox]

So i just printed out sample letters and the addresses that i would send them to.
today, instead of listening to my 2 hour italian lecture. i'm going to start writing letters :D

i'll see you all at CHD!

Thats awesome Ali. they cant ignore us forever. :)

Those letters are a great start but we also need to follow up and them and make sure they understand that we are trying to get more funding over all but also that these funds also make it toward P and PA research.

If you look over this CITE (http://www.psoriasis.org/news/press/2004/20040513_capitolhillday.php) from with in the CHD section of this site. you will see that.
Government psoriasis research funding decreased over last 10 years while NIH budget increased by 148%
Less than $1 per patient spent on psoriasis research annually. So funding is increasing however research for P on the other hand has lost funding so just asking for funding alone may not net us much. we also need to includ facts like these so that wording is put into the bills that address P its self.

I did a search through all the bills that were introduced in House and Senate this year and the word Psoriasis did not come back with one hit. This is no good.

and while there bills like:
Arthritis Prevention, Control, and Cure Act of 2004 [S.2338.IS] in the Senate
Arthritis Prevention, Control, and Cure Act of 2004 [H.R.4610.IH] the Houses version.
and
Prevention, Awareness, and Research Auto-Immune Disease Act [H.R.3359.IH] (http://www.theorator.com/bills108/hr3359.html)

These are great bills and a start. P is not mentioned in them. I linked to the last one as many other disease's are mentioned in that act and they are all terrable as well, we need to get wording into them so that P is also addressed. that last one was written by Mr. KENNEDY of Rhode Island and is in the Committee on Energy and Commerce. we need persons who have access to these reps to make them aware of P and let them know that we would like wording from these's bills that address psoriasis.

You can do more then just write letters, If you find your Rep. and Sentors web sites offten times you can Email them from there as well as fill out serveys voicing your concerns to them.

personaly I have writen a few of my reps. some have sent back very postive letters, other I just got back a generic form responce. and one has not responed at all to anything. (Not that, that will get me to go away :) )

-Fox

[bella247]

Let me tell you I went to CHD last year, and it was an experience I will never forget. It was amazing to me to be able to be there, and let my voice be heard. I for once was telling my story in a way that might help others. Forget about myself, I couldn't have cared less. I was there for those who couldn't be there, for those that were in the hospital or at home in too much pain to walk, for those kids that get picked on at school, for the people who stay up all night scratching praying for sleep, for those ever looked at twice or discriminated against, I along with everyone else there, was their voice.

I cannot imagine making all these trips to meet the wonderful people i have met here on the boards, and NOT GO TO CAPITOL HILL DAY. I cannot sit here day after day on these boards provided by NPF and not go to CHD and talk as much as I do here as I could there.

THIS DAY IS IMPORTANT! I am going to put myself out there and say just as important as the Conference, and yet we play passive. IT's a good time to help those who've helped you here on the boards. We need all the voices possible, be it in letter form or CHD.

So, I hope to see lots of you there!!

Isabel Esteviz

[jshearer]

I love the enthusiasm for Capitol Hill Day that I’m seeing in this thread. And just so you all know, Capitol Hill Day 2005 will be featured prominently in the Jan/Feb Advance which should be arriving in your mailboxes in early January. Information and online registration will go up on our website in early January as well. CHD 2004 was good, but CHD 2005 is going to be great.

I’d also like to point out that we’ve secured a group rate at the Washington Terrace Hotel (www.washingtonterracehotel.com). It’s a really nice, boutique hotel six blocks north of the White House in a really cool area. The group rate is $169, which may seem like a lot, but it’s actually a great deal for DC, especially for the quality of the hotel. I’d really like to encourage everyone who can to join me and the other Foundation staff who will be staying there. Of course, everyone is welcome to stay wherever he or she wants, but it’s nice to get as many people as possible together under one roof. It’s easier logistically, and it’s more fun to hang out all together.

Regarding specific legislation, I’ve copied language from the report that accompanied the appropriations bill that funds the National Institutes of Health. The contact we made with Rep. Rosa DeLauro’s office during CHD 2004 helped us secure this language in the report. This goes to show that your participation in CHD can make a difference. Hope to see you all in DC!

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

House Rpt.108-636 - DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, AND EDUCATION, AND RELATED AGENCIES APPROPRIATION BILL, 2005
Psoriasis.--Psoriasis is a chronic, immune-mediated disease that affects more than five million Americans. A 1999 NIMH-supported study found that patients with psoriasis reported reduction in physical and mental functioning comparable to that seen in cancer, arthritis, hypertension, heart disease, diabetes, and depression. The Committee considers research on psoriasis and psoriatic arthritis important, and is pleased that NIAMS helped create a psoriasis tissue bank from which the first several psoriasis genes have been identified. The Committee encourages NIAMS to support additional research into the identification of other genes expected to play a role in psoriasis pathogenesis and to strengthen clinical research on potential therapies for psoriasis and psoriatic arthritis.

Senate Rpt.108-345 - DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, AND EDUCATION, AND RELATED AGENCIES APPROPRIATION BILL, 2005
Psoriasis.--Psoriasis is a chronic, immune-mediated disease that affects more than 5 million Americans. A 1999 NIMH-supported study found that patients with psoriasis reported reduction in physical and mental functioning comparable to that seen in cancer, arthritis, hypertension, heart disease, diabetes, and depression. The Committee considers research on psoriasis and psoriatic arthritis very important, and is pleased that NIAMS helped create a psoriasis tissue bank from which the first several psoriasis genes have been identified. The Committee urges NIAMS to support additional research into the identification of other genes expected to play a role in psoriasis pathogenesis, and also to support additional clinical research on current and potential therapies for psoriasis and psoriatic arthritis.

[babzee23]

hey guys, im a little sick right now (...cold, fever...it had gone away but then i had a sip of my also sick cousin's pina colada, and it came back) so obviously my P is acting up....so im home, with a lot of time on my hands...... I have been reading up on the capital hill threads as much as i can and just wanted some advice from you guys on what exactly i can do to help. Me and my sis will definately go to DC, but besides that, what else can I do? who exactly to write to, how to gather more people to go?( should put up flyers in all the local derm offices??) Again, im the only person i know with P, besides all u sweethearts i met at Connolly's. I am still kinda new to the boards......be4 i found the NPF boards i would never have considered anything like this...but you guys are such great motivation....So in a nut shell....any suggestions? :)

[Raynard_the_Fox]

Sorry to hear your a little under the weather. But it was nice to meet you and your sister last weekend and it great that your taking intrest in Capital Hill Day and a push for change. I hope more new persons like yourself get involved.

Like I posted in first thread the first thing you can do start by just sending I simple letter to your elected officials.

you can find your House and Senate Reps info here:

House (http://www.house.gov/)
Senate (http://www.senate.gov/)

and here is a link to a simple sample letter that could be send to both your senators and your House rep.

Sample Letter (http://www.psoriasis.org/resources/advocacy/sample_letter.php?PHPSESSID=eb2cf56fffba60e209bb01 bd70fa4996)

you dont have to follow that its just a sample and you could use it just to get ideas from or just take bits of info out of it. but you basicly want to keep them short about one page, and what you want to do is just let them know briefly what P is, A little about how it has effected you (or someone you know), and what action you would like them to take. End the latter with thanking them for there time and asking for a response. (most of the time you will get one if you ask). and depending on how they respond you can build from there.

-Fox

[bella247]

Fox, pretty much sent you in the good direction!

I was going to post this later (when the magazine came out) but I will suggest it now, that you take your finished copy of the NPF Advance and give it to your dr. office for other patients to see.

If i recall last year at CHD, many of the people present actually found out about the day through the Magazine, so that would be a great and worth a try at the very least!

IF you (or anyone else) have any questions about CHD from an atendee perspective feel free to PM me anytime!!!!

take care and smile Bella

[kkellogg]

Bump......................

[babzee23]

you guys are great, thank u for explaining everything....its on now!

[makeitgoaway]

I'm also looking forward to going!

[bella247]

You should write letters to your respective reps. I think it would be great if people would share the letters they've written, to give others ideas and motivation as we get closer!! I hope to write mine over break and will post it ASAP!!

take care and smile

Bella

[ericm]

You should write letters to your respective reps. I think it would be great if people would share the letters they've written, to give others ideas and motivation as we get closer!! I hope to write mine over break and will post it ASAP!!

take care and smile

Bella

Hello Bella and PJ and company,

All of you are doing great job for the psoriatic community, keep up the good work.

Attending this event would have been great if not for my other plan. I will try to help through letter writing instead.

best,
eric

[jshearer]

You guys are so energetic and creative that you keep beating me to the punch...

We're planning a large-scale letter writing-campaign for March/April relating to Capitol Hill Day. So, by all means, please send a letter now, but please join us again in the spring when we kick off the letter-writing campaign.

As soon as we have more details, I'll be sure to share on the message boards. I've also got some big news regarding Medicare that I'll be posting later today, so if you are a Medicare beneficiary with psoriasis and/or psoriatic arthritis, stay tuned...

To conclude, here's a link for those who want to contact Congress now (thank you to everyone who has already directed people here):
http://www.psoriasis.org/resources/advocacy/contact_congress.php

And, as always, don't hesitate to contact me with questions or concerns.

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

[chromediva]

sounds like a road trip to me :D
me and DH ;)

[PJ Leary]

Hi everyone,

Ok, so far I count 19, see list at the end. Joey, thanks for the show of support and the advance information. We are motivated and we are excited. Joey, though it is nice to stay in one place, you'll have to forgive those who need to make budget decisions and make other plans. Mike and I are only trying to increase our numbers for attendance by suggesting alternatives. You must admit that we had no trouble joining in even if we were in a different place last year. In fact, I think our group outlasted many others in the evenings and still made it to everything.

The Board Leadership is and has been behind this 100% from the get go. I could not agree more with Bella that except for anyone who has never attended a conference, CHD takes precedence. In a perfect world, everyone would be able to do both.

However, I am thinking about what the next medication is going to cost the average patient with moderate to severe disease, and I am worried. I have spent most of my own life with severe disease, and even today struggle to pay the co-pay for my meds, which is well over $6000.00 annually. I look at the people who cannot begin to afford that, and I wonder why it is that the government that we pay so much to in taxes is not helping. Like most people with good insurance, for which I pay dearly, my coverage has decreased while my out of pocket costs have increased astronomically.

Then we look at the underinsured, or those folks with none. It only goes from bad to worse. In fact, I would call it tragic.

There is a way to change this horrible cycle, and it begins at CHD '05. When we can get legislation that directs NIH funding to research specifically for psoriasis and psoriatic arthritis, we lessen the burden financially on the manufacturers. The end result is lower costs for the medications we so desperately need.

This is one reason why CHD applies to each and every one of us, and why we need to participate. I am glad to hear of the 19 who have made a commitment so far, but we need many more to make our goal a reality. Please consider what you can do to arrange your attendance, and continue to post here with any concerns.

The 19 committed:

Mikek
Mitch
Isabel ( Bella )
Steve ( makeitgoaway )
Melissalynn
Jen ( sparklingfire )
Kate ( katied7040 ) & dh
Babzee ( & ? )
SandraJean ( & dh )
Chromedive ( & dh )
Sue ( slowe, maybe? )
Ray ( Raynard the Fox )
Krista ( kkellogg )
Diane ( mdgirl )
Jody
RichJ ( ? )
Karen ( ouchyk )
PJ Leary

Let's please hear from the rest of you!

[ouchyk]

Hi PJ,

I had posted on the PA thread that Bella had posted, I plan on joining all of you in this most important meeting of the year.

Karen :)

[chromediva]

JUST A IDEA! :D

Hey anybody that rides, (motorcycle) want to meet up and ride together? I know we have a few people that ride in the Southern States. we will be leaving Daytona Fl and riding up to N. Carolina, spend the night and ride into D.C. the next day. anyone want to hook up????? :cool:

[Kimbercat]

This is sounding BIG this year! :cool: I was a question mark until today, but came into some good fortune, so count me in for sure!.....can't wait! :D

[Karen_M]

For those who've been awaiting its arrival, the Psoriasis Foundation's 2005 Public Affairs Agenda is now available in PDF format.

Here's a direct link: http://www.psoriasis.org/files/pdfs/advocacy/2005_public_affairs_agenda.pdf

It's also available on the Capitol Hill Day page:
http://www.psoriasis.org/resources/advocacy/capitol_hill_day.php

Thanks, everyone!

Karen Martwick
Web Content Manager
National Psoriasis Foundation

[littleangel]

The 19 committed:

Mikek
Mitch
Isabel ( Bella )
Steve ( makeitgoaway )
Melissalynn
Jen ( sparklingfire )
Kate ( katied7040 ) & dh
Babzee ( & ? )
SandraJean ( & dh )
Chromedive ( & dh )
Sue ( slowe, maybe? )
Ray ( Raynard the Fox )
Krista ( kkellogg )
Diane ( mdgirl )
Jody
RichJ ( ? )
Karen ( ouchyk )
PJ Leary

Let's please hear from the rest of you!


don't forget about me!

[kimberlyjoy]

Hey Guys!

It totally sucks for this one event that i live in Canada... so theres not much i think that i can really do... but- lemme know if there is ANYthing!

x0x0x Kim

[PJ Leary]

Hi,

Sorry about those I missed, you certainly need to be counted! That includes:

Ali ( littleangel )
Kim ( kimbercat )

Where are the rest of you? Ollie ollie ...........

:)

[nitegale]

I am going to make every effort to be there too. As soon as I get back to work I am putting my schedule in for that time. I am hoping my dh will accompany me.

Marie

[rb83993]

I would love to go. I might have missed it in all the posting, but when is this scheduled? I have never been to D.C., so this would give me a great reason to go.

[jshearer]

Several people have contacted me about registering for Capitol Hill Day 2005 (April 10-11) in Washington, DC. Although the "official" registration begins in early January, I have been collecting contact information from those who are interested so that I can keep them in the loop.

If you are interested in Capitol Hill Day 2005, please email advocacy@psoriasis.org and include your name and contact info. It would also be helpful if you could include the name you post under on the message boards (so I know who I'm talking to!).

And I cannot stress the following point enough: no previous political/lobbying experience is necessary. You aren't expected to be an expert on everything related to psoriasis. The Foundation will train you and provide you with the information you need to be an effective volunteer. And I'm sure PJ, Rosy, Bella, MikeK, and several others can answer any questions you might have about this issue. I'm sure they'll correct me if I'm wrong, but I think they felt prepared last year, and we're going to do even more training this year.

So please email me your contact info if you're interested in CHD 2005. And don't hesitate to ask any questions.

Happy holidays!

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

PS-and thank you Karen for linking to the 2005 Public Affairs Agenda.

[PJ Leary]

Hi,

I have to agree here that Joey and his team from NPF did a remarkable job with the first CHD. They gave us lots of information and were very well organized. Each one of us felt as though we had the information we needed to get the job done when we began our day on the Hill. With the exception of just a very few people, everyone who attended last year was new to the process.

I want to make that very clear, many or most of us had no idea what we needed to do until NPF showed us the way. That does not mean that we are uneducated or simple fools, the political machine is not something most of us deal with on any regular basis. While we all know that we may write to our representatives and congressmen, and perhaps do so, that is not enough to get the job done.

We need bodies in DC.

I can only count those who commit. What can you do?

[kimberlyjoy]

Joey,

Im still curious, is there ANYthing that i can do?! as far as writing letters or anything like that?! or would it do nothing cuz im canadian?!... lemme know!!

~Kim~

[JodyGK]

Well, I got so excited about this thing, I went ahead and booked my flights. I'll be flying into Washington D.C. on Friday, April 8th (my birthday!) and leaving Wednesday night, the 13th. I can't think of any better or more life affirming way to spend my birthday than advocating for this disease along with people I've grown to care deeply about.

I figured by booking early, I had a better chance at a good fare. My figuring paid off! I got a great fare from Jet Blue (if it flies out of your city, I recommend checking it out). See you all on Capitol Hill! Let's make some noise!

Jody

[makeitgoaway]

Joey,

Im still curious, is there ANYthing that i can do?! as far as writing letters or anything like that?! or would it do nothing cuz im canadian?!... lemme know!!

~Kim~

I don't know much about the structure of the Canadian government, but am willing to bet you also have representatives there who have to power to fund more studies and research in your country. Write them letters and get involved as we are doing in the US. We need global support and you are in a position to help with that.

Thanks for asking!

[Raynard_the_Fox]

Hope all had a Pleasent Holidays.

And now that the crazness of the season will soon be behind us I hope we can find some time to help push for the cause. Either by atleast writing your reps or being have to be at CHD.

Best wishes to you and your Faimly,
David

[trizahler]

This is great.

I am going to try my hardest to be there.

[bella247]

Happy holidays to you all as well....

Today I am very sick with hands in pain and P appearing on my face...

:(

I am hoping more people step up as we get closer (though still months away, early is best) through letters or by being there!!!!!

so i am bumping this thread with those hopes!!

xo

bella

[Kimbercat]

another bump in hopes you feel better soon, Bella. :( I think we're going to make some noise in DC this year! :) ...after all, I'll be adding my big mouth! :p

[babzee23]

oh, im so sorry your flaring up bella, and im especially sorry this is happening to you during the holiday season :( Hope you get well soon,....
as soon as i get back to NY......

(i'm in the Durty South visiting family who just moved down here this summer from NY.....its culture shock....people are missing teeth...and when i say i am indian, they say its a shame what the white folk did with your land),

i'll start writing some letters, and start rallying some people for DC! Get well soon honey boo boo :p

[Raynard_the_Fox]

oh, im so sorry your flaring up bella, and im especially sorry this is happening to you during the holiday season :( Hope you get well soon,....
as soon as i get back to NY......

(i'm in the Durty South visiting family who just moved down here this summer from NY.....its culture shock....people are missing teeth...and when i say i am indian, they say its a shame what the white folk did with your land),

i'll start writing some letters, and start rallying some people for DC! Get well soon honey boo boo :p

Hey those are my people you are talking about. http://boards.straightdope.com/sdmb/images/smilies/mad.gif ..........http://boards.straightdope.com/sdmb/images/smilies/wink.gif

Come on its the New Year, make a resolution to make a diffrence.

-Fox

[JodyGK]

I just made my reservations with the Washington Terrace Hotel. Just to let folks know -- to get the NPF discounted rate, you need to call the hotel directly at 202-232-7000 and ask for the Group Coordinator, whose name is Lois. I had no trouble getting the discounted rate of $169 per night for all five nights I will be there.

So now I'm set...got my flight, got my hotel reserved...I'm ready to hit Capitol Hill! Can't wait to see you all there!

Jody

[Karen_M]

Online registration is now available -- just follow the link on the main Capitol Hill Day page: http://www.psoriasis.org/resources/advocacy/capitol_hill_day.php

Happy New Year!

Karen

Karen Martwick
Web Content Manager/Writer
503.546.8376
kmartwick@psoriasis.org

[babzee23]

no hard feelings fox! my family has a business down here, there just as much my people as they are yours.....i am in mississippi right now, went to new orleans yesterday :rolleyes: .....wheres your peoples from????

[ouchyk]

I'm all registered & looking forward to advocating not only for myself but for those of us here who suffer. It's one postitive thing that we all can do to help ourselves!!

Karen

[Raynard_the_Fox]

no hard feelings fox! my family has a business down here, there just as much my people as they are yours.....i am in mississippi right now, went to new orleans yesterday :rolleyes: .....wheres your peoples from????

No I was joking and thats pretty close to how they are were. :)

I am in LA now but I came by way of the mountins of Virgina. Acculy I have Family very close to D.C. I dont know what my schedule will be like or theres but I may get to see some of them again.

-Fox

[kimberlyjoy]

hey Guys!!

PLEASE PLEASE PLEASE if you are able--- take this opportunity... it is an amazing opportunity to get out there and make your voice heard!... i think that if you dont even make an effort to be able to be there ( i realize that its hard with work and stuff) then you cant complain...

x0x0x Kim

[Bubbbles2002]

Hello,

I would love to go to this. April 10th is my 21st bday :) I will see if I can get the funds together!


Ashley

[bella247]

That would be great if you are able to go!!!! We need all the voices we can get!! Hope to see you there!!! take care, bella

[MikeK]

I'm all registered!

Can't wait!

Mike

[bella247]

here are 2 other ways people can help for CHD....taken from the CHD link




HOW YOU CAN HELP
If you can't make the trip to D.C., you can still help. Please consider making a donation. Without the financial support of our friends and Members, Capitol Hill Day would not be possible. You can even contribute your airline miles. Email getinfo@psoriasis.org for more information.




bella

[dmedonis]

I think this is important, and an opportunity to participate in the fight against this horrific disease that's been a part of my life for 40 years. And I can think of no better way to meet some of the wonderful people who have supported me since I joined up here last August.

That being said, I must hesitate at this point because of the finances, but I may be getting some tax refund money that could solve that problem. I should know for sure within a month or so.

In the meantime, count me as a tentative yes...

Doug

[Bubbbles2002]

count me in as a tentative yes also ;-)



Ashley

[JodyGK]

Our local support group's next meeting is Tuesday, January 11th. At that meeting we will be talking about CHD. Information will be passed out on who to write, where to write to, where to find their email addresses, and sample letters to write. We're hoping to get the whole group involved in a letter writing campaign, and hopefully a few more people from our area to attend CHD. I'll be asking all my non-P friends and family to also get involved in letter writing. Can't wait to see you all there!

Jody

[ouchyk]

Jodes,

" I'll be asking all my non-P friends and family to also get involved in letter writing. Can't wait to see you all there! "

DITTO!! :D Looking forward to seeing the sample letter posted on the advocacy site, so I can get my family and friends involved as well.

Karen

[PJ Leary]

Hello,

Time to post again with a head count.

We were at 21. Let's add:

nitegale
trizahler

That's 23. We also have 2 hopefuls:

Ashley ( bubbles2002 )
Doug ( dmedonis )

That could make 25.

We need more commitments!
'
Karen Martwick, thank you for the helpful post with link, I plan to follow it to register after I make this post, and I hope many more will join me. At this time, MikeK and I are still planning to stay at the Kellog, pending their com,pletion of renovations. While we understand that it is nice to stay all in the same place, many of us have financial considerations if we are to maximize our allotted $ for NPF events this year.

Let's all please keep this post on task and up on top!

[ouchyk]

" Let's all please keep this post on task and up on top! "



Bumpin' it up :D
__________________

[slowe]

I'm not going to be able to make it. I was going over my finances and there is no way I'll be able to afford it. But I will be getting my friends, family & coworkers in on the letter writing campaign.

[ouchyk]

Sue,

That's awesome. I think letter writing from those who cannot attend is soooo very important.

[SandraJean]

Hi,

I just registered and put a post on another thread about Capital Hills day. I'm sorry but my husband will not be coming to the Capital Hill day, but we will be trying to stay at the Washington Terrace. I mentioned in the other thread about a bus we will be using and if my wheelchair or scooter can get on it. Looking forward to meeting everyone and hope alot of people will be able to attend!! It's a great way to get involved!!

Sandy

[jshearer]

SandraJean,

If people need a bus with wheelchair access, we will make sure we have one. I've also confirmed that all the office buildings we'll be visiting are wheelchair friendly.

I'm happy to hear you've registered (we're getting more every day), and I'm looking forward to meeting you (and everyone else who has registered). Please let me know if you have any other questions.

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

PS-And book your room in the Washington Terrace Hotel as soon as possible. There are a limited number of rooms available.

[Gailfrankel]

I just read that at one time, psoriasis was equated with leprosy, and the church would actually declare people with psoriasis to be dead and expell them from the village! I guess things have improved a little since then, but anything that leads to better education and public policy is a Good Thing. Thanks to the ladies and gentleman who are taking part in this effort.

Damn glad im Jewish :)

I hope to be able to go. I want my voice heard!

Gail

[Bubbbles2002]

I will definitely be there! I have friends that live in Washington DC so I will be staying with them. How do I register?



Ashley

[jshearer]

Register online on our secure site:

https://psoriasis.org/securezone/2005_capitol.php

And let me know if you have any questions.

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

[Raynard_the_Fox]

I will definitely be there! I have friends that live in Washington DC so I will be staying with them. How do I register?



Ashley

Glad you can make it Ashley, I have family in the area I am trying to get to go since they do not live that far from D.C.

-Fox

[ouchyk]

BUMP.........we need more research......BUMP........we need better targeted drugs with less side effects.....BUMP!

Please Advocate.

[makeitgoaway]

I just registered!

[ouchyk]

Today's bump :D!

[MikeK]

The last time that I called the Kellogg Center at Gallaudet University, I got a recording saying that they were closed for renovations through Jan. 2005. (Some of us stayed there last year. Most of us paid under $100 a night.) I just called them again. The good news is that they've reopened. The bad news is that their rates have gone up -- dramatically. Their "standard rate" is $195 a night! :eek: Ouch! That hurts!

I'm going to see if I can come up with something cheaper then the "NPF rate" at the Washington Terrace Hotel. If I can't, then I'll have to bit the bullet and shorten my stay. :( (I had planned to turn this into a mini-vacaton and spend a few days sight seeing. :( )

I'll keep you posted.

Mike

[MikeK]

Last night in chat, several people mentioned that they can get a cheaper flight if they fly into BWI Airport instead of Washington National or Dulles. BWI is a VERY viable option for those of you who are flying. I just came from BWI's website (here's a link: http://www.bwiairport.com/). There's several ways to get to and from Washington, DC from there. (Just click on ground transportation and follow the links.) (I can't tell if the "supershuttle" goes into Washington.) If memory serves, BWI is about an hour from Washington. (Hopefully someone from the Baltimore/Washington area will refresh my memory.)

Mike

[bella247]

MAYBE AS A LITTLE MORE TIME PASSES THE HOTELS WILL HAVE SOME KIND OF SPECIALS ON ROOM RATES!!! WE SHALL SEE....

XO--BELLA

[ouchyk]

Mike,

Thanks so much for checking it out. :D Will be looking forward to what you find as far as lodging is concerned.

Karen

[ouchyk]

BUUUUUUUUUUMMMMMMPPPPPPPP :D Please join us!

[ouchyk]

Sunday bump.

Kim~ " We urgently need more funding from the National Institute of Health in order to continue to find better and safer options for treatment, and possibly some day a cure. Let's all strive towards that goal. "

Nicely said!!

[bella247]

The last time that I called the Kellogg Center at Gallaudet University, I got a recording saying that they were closed for renovations through Jan. 2005. (Some of us stayed there last year. Most of us paid under $100 a night.) I just called them again. The good news is that they've reopened. The bad news is that their rates have gone up -- dramatically. Their "standard rate" is $195 a night! :eek: Ouch! That hurts!

I'm going to see if I can come up with something cheaper then the "NPF rate" at the Washington Terrace Hotel. If I can't, then I'll have to bit the bullet and shorten my stay. :( (I had planned to turn this into a mini-vacaton and spend a few days sight seeing. :( )

I'll keep you posted.

Mike

Hey Mike,

I just wanted to let you know i have been checking out HOTWIRE (www.hotwire.com) (the engine you used for your Chicago stay) and I am seeing about $139 for a 4star hotel and even $100 for a 3star hotel. For those of you not familiar with Hotwire, it is similar to EXPEDIA (www.expedia.com) or ORBITZ (www.orbitz.com) where you can find cheaper hotel rates by paying in advance. The difference with Hotwire, however, is that you don't get the Name of the hotel until after purchasing. You only get a small description of the hotel and it's star rating, and it's general location. :rolleyes: but in a pinch, this may be an option for people. I have used this engine many times and have never been disatisfied with the hotels, (it's actually put me in some amazing hotels for next to nothing!!)

Anyhoo, just throwing this out there!!! (it's my nifty way to bump!! :D )

Hi everyone,

Unfortunately, I don't think I will be able to make it this year, however, I will start putting away money for next year right away so that I will be able to go then! Anyway, what you are all doing is huge and I hope you realize that those of us that can't attend do appreciate you! You are making a difference.

As soon as I am done here, I intend to send out an email to all my friends and family including a link to the sample letter in hopes that they can send letters to the reps also, as I will mail my first ones out tomorrow. I will continue to write up until CHD and after, and hope that my small contribution will be of some good. I can't do what you're all doing, but I'll do what I can and appreciate what you are doing for me. Thank you!



mari

[Raynard_the_Fox]

well the 109th congress has been sworn in. so there has been some suffling but now is a great time to see where some of your reps have ended up. and if any of them are on key commitee's we really need people from those areas to attend.

-Fox

[Marielle]

Well everyone...
I have tried everything but a lets get "Jessie to DC" fundraiser. We just are not going to be able to make it. I am still trying. Have my travel agent on it also. So far it is a no go. I am looking into renting a car and driving. It is only a 10 hour trip. YIKES!!! We will see...
M

[bella247]

AS POOR AS I AM RIGHT NOW, I WOULD BE MORE THAN WILLING TO CONTRIBUTE TO A "JESSE TO DC FUND"

I don't know that I can help much M, but please let me know if I can!!!!

Bella

[Raynard_the_Fox]

Dont worry M we figure somthing out.

Also I finaly got somthing back other then a fourm letter from my House Rep. See if you bother them enough they have to respond. (That or have me arrested for harrasment :) )

-Fox

[makeitgoaway]

Well everyone...
I have tried everything but a lets get "Jessie to DC" fundraiser. We just are not going to be able to make it. I am still trying. Have my travel agent on it also. So far it is a no go. I am looking into renting a car and driving. It is only a 10 hour trip. YIKES!!! We will see...
M

I would also be willing to help the cause. I think it is very important to all of us that Jessie and you are there.

[mupitz]

As I can't make it to Capitol Hill Day myself (I'm due in Court that week)...I'm trying to get my family and friends into a letter movement. Has anyone had good luck with the sample on the site? Or have any other preferred models?

[MikeK]

AS POOR AS I AM RIGHT NOW, I WOULD BE MORE THAN WILLING TO CONTRIBUTE TO A "JESSE TO DC FUND"

I don't know that I can help much M, but please let me know if I can!!!!

BellaDitto! It's important that you and Jessie be there! (Besides, it would be so great to finally get to meet the two of you.)

Mike

[rosy3939]

That goes the same for me! What ever needs to be done. Kids are our best allie. We saw what happend with Kira.

THis would be great if we can do it!

Mitch

[rosy3939]

Actualy it a very good point to make. Brining the family if you can works wonders especially a child with psoriasis. Children create opportunities for dults to make a strong case for funding and other issues that we mya bring to the table.

Sibling can make powerful statement about how this disease effect their parents. And how it effect their lives even though they do not have P or PA.

We need everyone there. Sufferers, caregivers, frineds and supporters. Come to Washington and help bring pressure on our govenment.

Mitch

PS Washington is a wonderful city to explore. Fill with lots sights and palces to visit and almost all of them are free.

[Marielle]

Thank You so much everyone but we are still not going to be able to go. It is too much to ask for...but on a brighter side we are going to go to the State Captial in Lansing with our West Michigan Support Group. We are going to be talking about it at our next meeting and get the ball rolling on getting Jessie out there. She is also going to have her photo put on a few of our flyers to hang up for our support group. I know of two other little girls in GR that have P but have not come back to the boards, so maybe we can get them to come out to play if they see that Jessie is in the support group.
Talk to everyone soon.
M

[rosy3939]

Hi Marielle.

I am sorry that you can't make Washiton D.C. but I do have a suggest for you and others who can't make the long journey or the cost in prohibited. I don't know of any congressmen or senators from any state that do not have local officers. I would urge all to make an appointment at thier local office and let you feelings be know.

As in Washington probably will not speak to your represenative but staff breif the congressman or senator on all visitors. They will take notes and formulate a report. No elected offical will say no to a meeting from constituants.

Although I would be great if you can make D.C., this is something just about everyone can do.

Mitch Rosenberg

PS. Many congressman and senators have evening hours too. Also most will sent a represenative to a support group meeting or gathering.

[Marielle]

Mitch
That is what I was talking about with Going to the State Capital. Brad and I talked about it the other night and we are going to bring it up at our next meeting and go to Lansing. I have a few contacts and so does Brad, so we are going to be doing our part but locally.
M

[rosy3939]

That is great Marielle. Remember that all thought the focus is on our Federal represenatives many state and local offical have a great deal of clout and may even have freinds or family members with psoriasis.

Elected state and local officals are automaticaly officals in the respective parties, Republicans or Democrates. They are very important cogs in getting a person elected or relected. If they become cheerleaders for our cause they can influence their elected officals to take a stand for those issues the NPF is fighting for.

Also our individual state govements have a vested intrest in additional NIH funding. Money appropriated from congress to NIH, filters down to many state and private research facilities within their state, such as University of Michigan in the state in which you.

That intern leads to jobs and more money to be spent within the community. It is all inter-related. So states do have a vested intrest in publiclly allocated funds from congress.

They also set rules and guidelines for medicare and medicade reimbursement which is money the states get from CDBG (community delveopment block grants).

So the bottom line is pressure put at state and local level is very important. NPF's focus is in Washington DC, but voice from all over help greatly!

Mitch Rosenberg

[Kimbercat]

All registered! :) Looking forward to this important event!

[rosy3939]

A note to those who are going to Capatol Hill Day and are particularly coming a long way from CA, OR, etc. If you want to enjoy Washington, DC before or after Capital Hill Day I have a suggestion.

Some of the major sights in Washington now need tickets to get in. The White House, Capitol etc. If you cntact your local represenative or senator they will arrange tickets for you. These ticket will prevent you from standing hours in line and some come with private tours. Every congressman and senator are alloted a certain number of tickets. Those represenative from distant states usual have plenty of tickets available because less folks travel cross country than from NY, NJ, DE VA, MD etc.

Asking for tickets will serve two purposes.

One, you will received tickets for places such as the Capitol where you will not have to wiat on line for hours like everyoe else. But more importantly.

Two, It will establish a relationship with you represenative office and give you an extra excuse to go to thier offices to pick them up either in Washington DC or their local offices.

While ther you can talk up the NPF's adgenda!

Mitch

[misales]

As Marielle mentioned we will be discussing making a statment in Lansing our state capital. Since I personally have good insurance I am not overly informed on this matter, however, our state does have a M kids insurance program. Basically I think that means that all kids have insurance in our state even if they can't afford it. Knowledge and support of programs like this can help us help those who are in need of assistance.

Anyway, I think that local or state level is important as well. The other nice thing about it is that I think that all of us in our group should be able to make this statement without the added expense of the extra time and extra expense of going to Washington. This should go for most of us supporting the psoriasis cause. Taking a day off and driving to your state capital, car pool all be it, should not be an extraordinary burden upon ones lifestyle or budget.

Mitch also mentioned the University of Michigan in his post. I totally must say that this is true. Many of our states have state universitys that are active in the treatment and research of psoriasis. Recently, one of the texas state universitys put out some promising information on Stat 3 that got some recognition on the boards and in the news. I will tell you that the reason I have the M on the avitar is more than football. Now the U of M has been instrumental in my treatment and current remission. I am somewhat in debt to them for their proactive approach to my treatment. They get money and support from the state. I think it is worth while to make a statement in your state captial too, especially if you don't have the resources to make the trip to Washington.

Although most likely most of the psoriatic population can be reasonably treated with local dermatology, I believe that there is a nitch with those of us with severe cases may benefit with a university medical type approach. Thus it is important for our state and local level political types be informed of Psoriasis. So if for whatever reason you cannot make it to DC, a state or even local trip may be something that you are capable of doing.

I have also made tentative arrangements to have the city with whom I'm employed make a "official proclamation" for psoriasis awareness month. Which should be coming up in august I think. Anyway, maybe our small group can convince the governor of Michigan to do the same or at least give it a college try.

I would like to go to Washington, and hopefully someday I will, however, in the meantime I think local or state awareness is important as well. So if you have plans or make a statement locally, be sure to post it here so others can see what we as indiiduals with psoriasis can do to help.

[bella247]

Activism on any level is great!!!

As long as people are standing doing nothing to help themselves or others, then that is great!! I am hoping to talk to my respective reps, personally, soon.... we shall see!

take care and smile

bella

[JodyGK]

Mitch, great suggestion. Another idea -- when I went to Sen. Boxer's and Feinstein's web pages, I noted that both host a meeting once a week on Capitol Hill while Congress is in session that is open to all their constituents, as long as advance reservations are made. I won't be in town for Sen. Feinstein's Thursday breakfast meetings, but I will be able to attend Sen. Boxer's on Wednesday afternoon. I plan to make a reservation to attend this meeting and hopefully wangle a few words with her (or anyone who'll listen!). I don't know if I'll get very far, but it's worth a shot! They're free of charge, so at most I'll be out a couple of hours of time.

Jody

[MariaPaula]

Hi everyone !! I hope that you didn't forget about me. I saw so many newbies who maybe never read one of my posts. It had been a while that I don't read or write the threads and I didn't even enter to read the news in this site neither. I just posted during the holidays, just to wish you all a Happy New Year but I didn't have time to keep reading the threads...

So... I didn't know about the Capitol Hill Day until TODAY that I had the Advance Magazine in my hands. THIS YEAR, I'LL BE THERE !!!!. I will request one or two days off from work because I don't want to miss this huge opportunity that we have. I couldn't wait to post here and let you all know that I'LL BE THERE !!! I already talked with my husband and I count with all his support. He is coming with me just because he knows how much I wish to be there. I want to take action and deliver a message to the Congress. I'll be there but because I am not very good expressing myself in English (I have a strong accent), I will write some document, a letter, or a flyer... whatever. But I will do something and I will be there. After, I log off from this site, I will check for the plane tickets (I am in OH) and I know that it has to be a cheaper hotel that The Washington Terrace. So... let me check about all that, and I will see you there. I don't know who are my representatives or my senator, but I will find out. Maybe, I don't even have one because I am not American, but my husband does and I am a permanent resident, so maybe I have some rights like you do. It doesn't matter to me. I'LL BE THERE, and if they can't set an appointment for me, I just will be happy to share my experience with all of you and to increase the commitment to psoriasis and psoriasis arthritis research.

I'll use this long week end off to start planning my trip.

I have too many things to share with all you, guys. And I know that I can make a difference. I am so proud to be part of this country.

I MISSED YOU ALL,

MariaPaula.

[MikeK]

Maria,

I'm so glad you're coming! It will be great to finally get a chance to meet both you and your husband. Don't worry about your accent. Just being there is what counts!

Mike

[PJ Leary]

Maria,

Tenemos algunas personas quien pueden traducir para ti. Yo soy una, pero estan otras. Tienes que venir a DC, qureida, y te aydaremos. Nos veremos aya!

We have people who can translate for you. I am one, but there are others. You need to come to DC, dear, and we will help you. We'll see you there!

[Kimbercat]

MariaPaula,

I'm so excited that you will be there! :) I'm really looking forward to meeting you! I've missed you on the boards.

[MariaPaula]

Thank you, PJ, I appreciate it. But I can understand English so good. I am bilingual and I am able to read any document in English. My weakness is my accent, but I know that I will be fine. I am working on it and I learned that I have to talk slowly so people know what I mean.

As I posted in the other threat, I am working with my letter. I am not bad creating letters, so I know that I'll do a good job. I know how check my grammar and spelling mistakes (lol), before I send something to a higher authority, and I will do my best to find the correct professional words. I studied Journalism in a Spanish College and I was a journalist for more than six years in my country so I know that I'll do something valuable. I am detail oriented and I know what is our goal.

MIKE: I was very nice to chat with you yesterday night. You gave the last push that I was looking for. I already found who is my representative.

KIM: I will be so happy to finally meet you in person. We are going to have a great time together.

See you all in there,

[chazman]

my first activity with npf will be going to d.c

[JodyGK]

Excellent news, Chazman....very much looking forward to meeting you then!

Jody

[Kimbercat]

my first activity with npf will be going to d.c
Looking forward to meeting you, Chuck! :)

[bella247]

This is wonderful Chuck and Maria!!!! I cannot wait to meet you both!!!!!

Anymore takers?????

Don't forget, if you can't go, WRITE!!! :D

I will see you both in DC!!!

take care and smile

Bella

[bella247]

here's a daily bump for an important thread!!


>>>>>>>>>>>>>>>>>bump<<<<<<<<<<<<<<<<<<<<<<

[jshearer]

Hello everyone. I thought I would give the people who continue to follow this thread an Advocacy update.

We've already had about a dozen people register for Capitol Hill Day, but I know there are many more who are interested in joining us. Please register sooner rather than later. The Washington Terrace Hotel has a limited number or rooms at the discounted group rate, and right now airfares are about as cheap as they're going to get. So please register ASAP! You can find several links at the bottom of the homepage www.psoriasis.org or just visit https://psoriasis.org/securezone/2005_capitol.php

Currently, I'm lining up some guest speakers and putting together new training materials to make sure that all you volunteers out there are informed (perhaps even entertained?) and prepared for your meetings.

Capitol Hill Day 2004 was good, but CHD 2005 will be even better.

And, as always, please don't hesitate to contact me with any questions.

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

[jshearer]

In case there's anyone out there who, God forbid ;) , doesn't think we can make a difference, here's an update to an advocacy action that took place a few months ago (hint-all of us can and do make a difference)...

Three months ago, the National Psoriasis Foundation sent out its first e-mail Action Alert. Within 72 hours, more than 800 members of the psoriasis community contacted Medicare rule makers to request that the Medicare prescription drug benefit cover the full range of psoriasis and psoriatic arthritis treatments when it comes into effect January 1, 2006.

People are listening. In November, Medicare added Enbrel coverage for psoriatic arthritis to a program that provides certain self-injected biologic drugs for people with specific serious diseases. The Medicare Replacement Drug Demonstration allows up to 50,000 Medicare beneficiaries suffering from at least one of a dozen serious diseases access to significant savings on a list of specific drugs. Other diseases among the dozen covered include rheumatoid arthritis, multiple sclerosis, and cancer. The government has pledged $500 million to this demonstration.

More recently, the Foundation worked with Genentech and Amgen to expand this Medicare program’s coverage. In December, the Medicare demonstration added coverage of Raptiva and Enbrel for skin psoriasis. Amevive is already covered under Medicare Part B.

The grassroots e-mail campaign initiated by our Action Alert—in conjunction with the Foundation’s lobbying of the Centers for Medicare & Medicaid Services (CMS) and scientific information presented to CMS by Genentech and Amgen—has led to expanded access to two promising new biologic drugs for the hundreds of thousands of Medicare beneficiaries with psoriasis and/or psoriatic arthritis.

For more information about the Medicare Replacement Drug Demonstration, please visit: http://www.psoriasis.org/resources/advocacy/medicare_demo.php

Just imagine what we could achieve if enough of us got together and met with members of the United States Congress...

[chaimFL]

Joey,

That's wonderful news! Thanks for posting that information and letting us know that work does equal results.

[PJ Leary]

Hello ,

First, thanks to Joey for continuing to read and post to this thread. We appreciate the updates and the insider information, it keeps everyone reading!

I completed my registration and reservations for CHD this week. I will be arriving in DC on Saturday in the early afternoon, and returning home at the end of business on Monday. I am staying at the Washington Terrace ( in a smoking room ).

I have registered my daughter Deirdre for this event as well, she will be joining me. Dee has episodic psoriasis triggered by strep infections ( also my trigger ). She is 12 this year and has begged and pleaded with me to inculde her in this advocacy event. Please welcome her, not only as my daughter, but as a patient in her own right.

I hope that many others will join us soon in completing their registrations! I confess that I have lost count of those who have said they will attend. However, since Joey seems to be willing to give us updates, I believe I will leave it to him for the accurate count. Joey, please do keep us all in the loop. :cool:

[rosy3939]

My registration and hotel reservations will be completed by Monday 1/24/05. It is so important that as many people who can make Washington for Capital Hill Day be there!

Maria after chatting so often it will be a pleasure to meet you and your husband.

PJ I am so glad you are bringing Deirdre. I am sure she will be a powerful advocate for her disease like her mother.

To all other now is the time that you can do something positive to help yourself and others with Psoriasis and Psoriatic Arthritis!


Mitch Rosenberg

[bella247]

Miss PJ

I cannot wait to meet your daughter!!! If she is anything like her amazing mother, it will be great!!

I can't wait to see more commitment!!
Take care and REGISTER!!! : )

Bella

[bella247]

Okay, Just registered!! I AM IN...(admittedly, i did just encourage people to register, not even registered myself, COLLEGE BUDGET ya know, but now i can rightfully hassle people) :D

see YOU there!

[MelissaLynn]

Hi Everyone-
I will be there, though I am not yet registered- I soon will be.
Im still interested in "helping out" but I need to know whats going on with that. Please PM me.
For a list of Citys we fly- go to www.jetblue.com.
If you know of someone that wants to participate in CHD and is in or near one of our Citys, please contact me. The sooner I write my proposal to Jet Blue, the better. The number of flights I will be requesting is going to be based on the requests I receive. The quidlines are simple. The person must have P or PA. and they must be a verifiable member of NPF and they must submit a request to me before March 8th.

So, there ya have it. You can count me in, but more importantly, please PM me if you or someone you know of is interested in going and is in or near a city that Jet Blue serves. I will then write a formal letter of request on behalf of the Members I would like Jet Blue to help get to Capital Hill Day.
There are no guarantees, but I have excellent reason to believe this is something they will honor.
I believe its very important to have a strong voice this year, as medication cost rise, as debilitating diseases like ours continue to grow in numbers and so too does the number of people it affects.

Best to you all,
MelissaLynn

[SandraJean]

Hi,

Just wanted to let everyone know I will be coming to Washinton. I really am looking forward to it. It is such a worthwhile events to particate in. We all need to have research continue to help us all. PJ, I'm so pleased to hear your daughter will be attending also. I will be staying at the Washington Terrace also (in a smoking ,handicap room)We will be there on Sunday afternoon till possibably Tuesday morning. Melissalyna--great work with Jet blue. I hope that will encourage more people to be able to come. Mitch, I've been enjoying your posts. Everyone, I'm looking forward to meeting you all down in Washington. My husband and I are coming from Rochecter, New York and are driving.
Sandy

[PJ Leary]

Hi,

ML has a wonderful gift for NPF. We all should be most unhappy if every seat she has to offer is not used.

Let's please get this done, in spades, so to speak. Joey, since you are the NPF on this, I think you should track it.

Thank you to Mitch and the others who have said they will welcome Deirdre, I appreciate your support of my family as we continue to forge the road in advocacy. I figure that the sooner they learn how to do it, the better their lives will be.

I am personally going through a difficult situation with my own level of disease, both p & pa. However, I plan to be in DC for 4/11.

Regards,

PJ Leary

[Kimbercat]

I am personally going through a difficult situation with my own level of disease, both p & pa. However, I plan to be in DC for 4/11.

Regards,

PJ Leary
PJ,

So sorry to hear you're having a difficult time. I hope that you improve soon, and look forward to meeting your daughter in DC.

[Raynard_the_Fox]

got my plane tickets, took sometime and searching but I was able to get a round trip that really was not that bad cost wise.

Cant wait see you all again and continue the fight.

-Fox

[slowe]

Meslissalyn too bad Jetblue is nowhere near Michigan or I'd take you up on your offer. If I can find cheap enough airfare & hotel, I might be able to make it. I'll keep you posted.

[davidk46219]

Hi PJ
Just a note to tell you I will not be going to CHD Thanks for the invite though
DaveK

[littleangel]

HEY. i'm still gonna be there and my best friend samantha from school will be accompanying me. but i'm quite the newbie on this all...

what i can tell you is i won't be staying where the NPF got a deal because i'm a broke college student and we're gonna stay at a hotel i'll find through priceline.com.... if anyone did this or has any suggestions about what areas i should stear clear from on the outskirts of dc, i'd very much appreciate it.

any help at all, seriously, would mean a lot! :D


can't wait to see everyone there!

[bella247]

The good news is that they've reopened. The bad news is that their rates have gone up -- dramatically. Their "standard rate" is $195 a night! :eek: Ouch! That hurts!

Mike


MIKE et al:

I just checked the website Hotels.com (www.hotels.com) and if you type in DC and Dates, and go to an advance search (i typed hotel name contains Kellogg) the rate they gave me was $119.

Anyone who can pay ahead, (i am pretty sure that's how that engine works)
This may be a good deal to jump on. MIKE PJ Mitch Myself Rhonda and FlakeyMatt (i might be missing some sorry) all stayed there before.

worth a look into..........bella

[jshearer]

As those who came last year can attest, we start bright and early on Monday morning (April 11). You are welcome to stay anywhere you want in the city, but you must be at the Washington Terrace Hotel by 7:00-7:30am for breakfast and training.

My point: If you're interested in saving money by staying at a different hotel or with friends, make sure that it's near a Metro stop. Otherwise, you could end up spending a lot on cab rides. The Washington Terrace is three blocks from two different Metro stops, so anyone staying near the Metro should have no problems making it to all the Capitol Hill Day events on time.

[rosy3939]

Joey you point is well taken but money is an issue to many. Last year as you remember quite a few of us did stay at the Kellogg center and made to the breakfast in plenty of time. No one was later or missing in action.

We also all made the reception the Sunday evening befroe as well. So for all those who are committed to come to Capitol Hill day I don't believe time is an issue.

Second the Kellogg center which I did stay at in Washington has a scuttle bus to Union Station and then a short hop to the hotel.

Another reason for staying at the Kellog center is I am driving and parking is free there not the $25 a day at the Washington Terrace Hotel. With parking that brings the rate to $169.00 + $25.00 for a total of $184.00 plus tax vs $119.00 plus tax.

I am not knocking the NPF's choice of hotel just pointing out to those who are looking to save some money that there are other choices in the Washington DC arear to save some money.

Mitch

[bella247]

Do we have anymore takers yet????

hope to see more people committ!!

bella

[MelissaLynn]

Whats the count at now???

Oh yeah, also- Im looking for a FEMALE roomie, please.

Best,

[littleangel]

EVERYTHING is all booked for me. now i just count the days and buy proper clothes because i'm a college scrub at the moment! HA!

i know this information doesn't pertain to anything else but my excitement...

so let's just call it a *BUMP*

[Raynard_the_Fox]

Proper clothing! hold on here, no one said I had to get all dressed up. Besides its DC. My RedSkin Jacket is considered dressed up there. :D

Cool Ali I am glad things worked out for you and see you there.

-Fox

[jshearer]

Our numbers are growing every day. Last year roughly 30 volunteers participated in Capitol Hill Day. This year, at our current rate, we will easily beat that mark.

So...if you haven't registered yet, please do so soon. We need as many people as possible. Please keep in mind that the success of our efforts will depend on the number of people who participate.

And let me refresh some stats to get you all fired up...

The federal government spent more than $28 billion on medical research last year, but only $5 million on psoriasis and psoriatic arthritis research. In fact, while funding for the National Institutes of Health (NIH) has increased by 148% since 1995, psoriasis research at the NIH’s National Institute of Arthritis and Musculoskeletal and Skin Diseases decreased by 13% over that same time.

Each year, Americans with psoriasis lose about 56 million hours of work and spend more than $4 billion to treat their disease. Yet the federal government spends less than $1 per American with psoriasis while psoriasis causes as much disability as other major diseases, including diabetes, heart disease, hypertension, and depression.

Those who come to Capitol Hill Day and those who write letters to Congress will make a real difference in this effort. Let me say it again: The success of our efforts will depend on the number of people who participate.

Thanks,

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

[littleangel]

My RedSkin Jacket is considered dressed up there. :D

hahaha YES. i can eat instead of buy nice clothes!!!!


looking forward to seeing you and EVERYONE there!

[bella247]

Proper clothing! hold on here, no one said I had to get all dressed up. Besides its DC. My RedSkin Jacket is considered dressed up there. :D

Cool Ali I am glad things worked out for you and see you there.

-Fox

You are NOT going to DC in that RedSkin jacket!!!!!!!! We want you to seem credible....
:D :D :D

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.

[kkellogg]

Bump Bump Bump

[SandraJean]

bump........

[jshearer]

YOU can make a huge difference at Capitol Hill Day. 7-year-old Keira was the perfect example last year. (http://www.psoriasis.org/resources/publications/200501_chd.php)

Do it for yourself. Do if for your family. Do it for the younger generation within the psoriasis community who are in a unique position to benefit from increased research funding in the long lives they have ahead of them. Increasing research funding now will help bring about a greater understanding of psoriasis, leading to better treatments, and hopefully a cure.

The US Congress controls how the US government spends all those taxes that Americans pay. Last year, the government spent $28 billion on medical research. Only $5 million went to research on psoriasis and/or psoriatic arthritis. With your help, we have the ability to increase the amount the government spends on psoriasis research. Just imagine the benefit to the psoriasis community if the government doubled or tripled the amount it spent researching the disease.

Please join us for Capitol Hill Day 2005. Let Congress know that a $5 million dollar investment in research on a serious disease affecting more than 5 million Americans is not nearly enough! If 7-year-old Keira can make a difference, YOU CAN TOO!

If you have any questions, please don't hesitate to contact me.

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

Click Here for More Capitol Hill Day Information (http://www.psoriasis.org/resources/advocacy/chd_2005.php)

[littleangel]

bumpin it up :D

[Raynard_the_Fox]

been ultra busy and will be for the rest of this week but wanted to check up on this thread. Like Joey said do it for somthing greater then ones self.

see you there,
David

[MelissaLynn]

I just wrote to Senator Barbara Boxer to remind her of the letter I sent her last year, of the reply she sent me- and to tell her I would be in attendance of Capitol Hill Day in Wahington, D.C. and expressing my hope that she will be there- moreover to remind her of this event and that I am hopeful she will represent the need for funds to NPF.
It didnt take but 10 or 15 min.
I feel pretty good about it.

Best,
MelissaLynn

[jshearer]

writing letters to Senator Boxer and then posting about it at 2:30am!

I want to remind everyone that we're going to have a large-scale congressional letter-writing campaign in March/April. We're still working out the details, but it should be pretty cool.

I'll have more info in a couple weeks. I hope all of you will join in...

Thanks,
Joey

[kkellogg]

I registered today.

Looking forward to it,

Krista

[bella247]

Just bumping this up....we are getting a little closer, I hope to see more people follow....


take care and smile

bels

[gumbygirl]

Oh my Gosh - so sorry for not being on the boards more. Count me in also. Rachel - the support group leader for our Houston group will also be going. although I am not sure what day she is going up on. So, add two or three more to your headcount.

I will make sure that I register by the deadline.

In regards to Jessie and her family.... I really think that it is imperative that children go. Last year Kiera made a big impact and it would be a wonderful expereince not only for Jessie but a big boost to our cause.

Therefore, I would like to contribute to some money to help them go. I know others would also. Perhaps the NPF can set this up for us? If they set it up, Marielle and her family would be more apt to go. Perhaps we can add a extra amount to our registration to donate to them??? I know some people would love to go this year but can't because of other commitments. Perhaps, they could donate a few dollars also. They would have the good feeling of knowing that they are making a contribution to the cause.

What do you all think? Also, if the donations are substantial enough, we can invite others from the teen board.

We had spoken about this in the past in regards to donating money for Conference schorships... perhaps we can put it into action for this event???

[kkellogg]

Bump..........................

[Raynard_the_Fox]

just wanted to say we are now 2 months out and I cant wait.

Just wanted let everyone know that I got a really nice reply from my house rep a few days ago. Its taken a few letters and getting more and more info to really get a good response out of him. But it just shows that hard work can pay off. only real down side is he is not on a commitee that will be much help. but if any bills of intrest to us as P suffers come to the floor it is looking like we have his support.

Keep up the hard work everyone in anyway you can. we may have diffrent options on how the cure will come about but I think we all can agree that we want one.

take care all,
David

[makeitgoaway]

just wanted to say we are now 2 months out and I cant wait.

Just wanted let everyone know that I got a really nice reply from my house rep a few days ago. Its taken a few letters and getting more and more info to really get a good response out of him. But it just shows that hard work can pay off. only real down side is he is not on a commitee that will be much help. but if any bills of intrest to us as P suffers come to the floor it is looking like we have his support.

Keep up the hard work everyone in anyway you can. we may have diffrent options on how the cure will come about but I think we all can agree that we want one.

take care all,
David


Dave,

Even though he is not on a key committe, if you keep pushing you could try and get him to sponcer legislation or add a line item to one of his existing bills. Perhaps he would be willing to take a meeting, maybe even while we are in DC. Worth a try!

[Kimbercat]

I'm working on a co-worker whose 11 yr old daughter is in an Enbrel trial and doing well. She's starting to get excited over the biologics since this is the first thing that has worked on her. I'm not sure she can make DC, but we will definitely have letters if nothing else. I'd love to get another child to go tell thier story, since these are the most compelling ones, and the future of fighting and curing this disease. Let me know if anyone has other suggestions for them besides letter writing if they can't make it. :)

[rosy3939]

Every thing help if they can't make it and even if the can writing letters is very important!

Glad the young lady is responding to Enbrel. Didn't know they gave it to children.

Mitch

[Raynard_the_Fox]

you can also write the clerks of the commitee's. Figured I could bug them too tell they get tired of seeing my name.

Plus the California voters passed the 3 billion dollor bond for stem cell research this last Nov. wrote state legislator to put a portion of that toward P research. Might as well try since the mesure was passed.

-Fox

[jshearer]

It's pretty important that anyone who receives a response (related to a letter about psoriasis or psoriatic arthritis) from a Member of Congress send a copy to the National Psoriasis Foundation.

We are trying to collect all congressional responses to letters written about psoriasis so we can 1) identify any legislative opportunities and 2) track how responses change over time.

Send copies of congressional responses to:
Joey Shearer
National Psoriasis Foundation
6600 SW 92nd Ave, Suite 300
Portland, OR 97223
Or fax to 503.245.0626

And don't forget about the letter-writing campaign. More and more, it's looking like we're going to kick it off in April, or maybe late March. Stay tuned...

[jshearer]

I just wanted to thank everyone--including PJ, who started this great thread--for posting here, keeping positive, making suggestions, and asking great questions. Let's keep it going...

As David said, we're two months out...

[Raynard_the_Fox]

NP should be able to make copies and send them off. I should be getting a reply soon from my senators if the schedule stays on pace. usually takes them about 6 weeks to reply.

I also have a couple from Seator Feinstein that are pretty posative. Boxer been the cold fish but she been busy latley. :rolleyes: :D

-Fox

[jshearer]

I know some of you who have written letters about psoriasis or psoriatic arthritis might get a reply that doesn't even mention either disease. Maybe you've gotten a response that talks generally about "arthritis".

Whatever response you get, I'd like to see it.

[Raynard_the_Fox]

I know some of you who have written letters about psoriasis or psoriatic arthritis might get a reply that doesn't even mention either disease. Maybe you've gotten a response that talks generally about "arthritis".

Whatever response you get, I'd like to see it.

Very good, hopfully the letters will keep the momentem of CHD rolling. If you keep the snow ball rolling it will keep getting bigger just have to stay on it tell its too big to stop. (that was my last lame cliche of the day :) )

best of luck to you all.
David

[Raynard_the_Fox]

Just got through writing letters to the House commitee on Energy and Commerce and its chairman on the health subcommittee on Health, Nathan Deal.

There is a bill in that committee called the
`Prevention, Awareness, and Research Auto-Immune Disease Act'. (http://www.theorator.com/bills108/hr3359.html)
To increase awareness of and research on autoimmune diseases, such as lupus, multiple sclerosis, rheumatoid arthritis, and fibromyalgia, and for other purposes.

while this is a great bill that deals with some nasty diseases there is no mention of P research or funding. since this bill was introduced a few months ago and status says it still in this committee I wrote them asking that language be added that inclu