Washington Day was a big sucess but....

[rosy3939]

Hi everyone. Capitol Day in Washington was a big sucess. It was wonderful meeting new people from both the NPF staff and other members who don't unually don't use this media to comunicate with other fellow sufferers.

I know with our group, that wonderful contingen from New Jersey who came too Washington to make our voices heard our visit were a great sucess. We had the largest group there. Not only do we throw great parties but we are more than pretty faces. So to Mike Mat, my dw Carol and to the new folks that we met there , Irena and Charles are the star of Capitol Day their bright and chariming 8 year old daughter Keira.

We were able to to effectively convey yours and our message about the lack of lunding for research, the need for legislation to regulate insurancce company (although not at offical NPF position) to provent them from sytematically reject medical treatment plans from patient's physicians. The New Jersey group was met by pelasant and supportive staff members who all said there bosses support the NPF goal of addition funding to NIH and NIAMS in particular.

In our last meeting with Sen. Frank Lautenber's health lasion Rebecca Mandell was so impressed with our youngest member Kiara that she went back to see if we could get a photo op with her boss. A few minutes later Sen Lautenberg was in the meeting taking pictures with Kira. Hopefully that and other photo's will be posted on the board real soon.

Althought this event went well there are still many things that need to be improved on, over the next year. This was a good begining for NPF and its members but there is so much more they and we can do. I am, along with other going to PM, NPF staff members with suggestions and ideas. I know others who were there are going to do the same.

This year there were 29 NPF members. And I gaurentee you we made our voices heard. From the soft and so effective presentation from young Keira to my big mouth, those member of congress that we met with got our message. In a respectful and forthright preesentation. But there were so many other senators and represenatives that where not visited. Important members of various comittees in both the house and senate, that we didn't get too, like Health and Human Services, Appropiations. There were also appointments that congresional staffs never responded to the NPF but there also needed better follow up with them.

All in all this was a great start but we need to build on it. To me 29 members of NPF is not enough. We need bigger numbers of members attending next capital day and we need to keep putting pressure on our elected officals to support and help the NPF get it adgenda moved forward.

To my friends old and new. I say thank you again. To Bella who came from Chicago who truely understands the need for political action. PJ who dorve up from NC for your adive, opions, and knowledge that is so valueable both on the boards and to helping members that most people never see or hear about. And last but not least to Rhonda, a new friend from Houston who cut her treatment in the Dead Sea in Isreal by five days to fly back to be in Washington for this important event I am so impressed with the the oerson and your dedication to the cause.

There is so much work left to be done. This was a begining not an end. But it has become painfully ovious to me that a greater burden must fall on out shoulders. We are the engin that must drive these events because as good as the NPF staff is, we need to take more responsiblity for our disease. Not just the meds we take, or the treatment plans prescibed by our doctors but for the long term relief that we need. Politcal action is critical to the hope for better treatments and hopefully in my lifetime our lifetime.

Last of all thanks to Gail Zimmerman for meeting with us both in our little informal gattering and for joing us for dinner where we all had a great chance to tell her how much this organization and sight means to us and how it may be improved. Also to Joey who I harrased to no end, it was a begining

I am not going to post much any more because I want others who were there to add their own words and voices.

Thank you all,

Mitch Rosenberg

[makeitgoaway]

Nice job Mitch!

Thanks to all who attended!

WOW! I have a lump in my throat. I truly do.

Thanks to all of you who took the time out of your busy lives to meet in Washington for all of our benefit.

I hope that representatives from the other groups and the NPF staff will be posting their experiences as well. Was there any feedback regarding the letters we wrote to our representatives?

Thank you all.

XOXOOXXO

[bella247]

Each person/group only had meetings with their own state, so if no one was there from Conn., then nobody spoke to your Rep.

THe meetings that i had overall went well and i will be following up with the people i met with as well as the NPF. We've made our presence know which is just the begining in a long battle we ALL must fight!

As Mitch said we had DARLING KIERA AND HER WONDERFUL EXTREMELY ACTIVE AND SUPPORTIVE PARENTS there and it was a pleasure to meet such a young and ambitious girl (8yr. old).

Our focus points should be clear now more than ever, and I hope as the time progress, those that can, get involved. As i heard numerous times out in DC, "THE SQUEAKY WHEEL GETS THE GREASE." there are thousands of us here and millions of us alone in America, I think we can make an unbeliveable impact if we work together. Whether you have One Patch or a thousand of them, the time is now to come together and continue with letters, and meetings and dedication to really make things happen!!!

To everyone who went to Capitol Hill, you all did a tremendous unforgettable job!! WHO'S READY FOR ROUND 2????

tAKE CARE AND SMILE

bELLA

[rosy3939]

I have reposted this thread in the psoriasis in hope that more will read it and respond.

Mitch

[PJ Leary]

First of all, I would like to thank the NPF staffers, the ones who were in DC and the ones who were not for their hard work in planning and implementing this event. My additional comments will be forthcoming to my new friend and tag team partner Joey Shearer by the end of today.

NPF asked us if we thought that a National Conference in DC would be a good thing, looking to create a forceful presence in the Capitol and bring a loud message to our Representatives and Senators by doing so. Frankly, though I think that is an excellent plan for the future, I don't think we are ready yet. Out of 40,000 members, there were only 29 who were able to support this endeavor with their presence.

Ideally, I would hope that if there were to be a Conference in DC, every member of both Houses would have appointments with Members. As Mitch so rightly points out, we can't stop there either, we need Committee Members and other key individuals in positions to take effective action on our behalf.

I found the meetings I attended to be for the most part effective as a beginning. This was my first foray into this type of advocacy, my experience is much more on the individual patient end of things, as many of you know. I am excited about the opportunities ahead to learn to become a more effective spokeperson for myself and my fellow suffers.

Since I was a newbie at this type of activism, I was very appreciative of he guidance provided by NPF staff. They prepared us well for our day with helpful information about protocols and with powerful information and statistics to assist us in making ourselves clearly understood.

As always, the receptions put on by NPF were first class all the way. That is always a helpful way to break the ice and allow everyone to mingle and become re-accquainted, and to meet new members.

The social aspect of these events is one of the nicest perks, and this get together was no excpeption. So nice to see darling Bella, our youngest but by no means smallest adult member. Bella took time off from work and school to come to DC to actively support this campaign. We are all humbled by her, ( Nice article there, too, darlin')

As Mitch pointed out, Rhonda cut her time at the Dead Sea short to come directly to DC. Keira's folks, Irena and Charles, left their other three small children ( all under the ages of 7 ) to come . While everyone made personal sacrifices to support this event, some were in fact greater than others , and I believe, worthy of special appreciation .

Oh, and I finally got to meet Mike!;)
And let's not forget the ever so charming Flakey Matt..:cool:

Hope to see you ALL at the next one.

[MelissaLynn]

To you 29 that made representation of we -nearly 5 MILLION that suffer with Psoriasis.
To you 29 that made sacrifices- Great and selfless for the 40 THOUSAND NPF members
To you 29 that did all you could so that the voice of so many MIGHT be heard...
I am humbled, I am grateful and I am so PROUD and THANKFUL to you.

I wish I would have been there. I wish I would have done more. I most certainly WILL BE AT OUR NEXT CAPITAL HILL DAY!

Your efforts were GREAT and so appreciated and I, personally am ashamed I missed the event. Still, I now have a much better understanding of HOW VERY IMPORTANT this event is and will be that much better prepared for next year.
My thoughts and prayers were with you all. My wishes for a safe trip, an enjoyable time and an forum for which to speak were granted- and so I am indebted to you, my family.
You are right, there IS power in numbers and I feel I should have added to your numbers, to your voice and have lent my support.
The best I can offer is to tell you how INSPIRED I am by you 29 and how PROUD of you I am. I personally will actively recruit for next year. I have made good connections with the Mayo Clinic, my family and friends have a better understanding of this disease ad its severity and I WILL do my best so that Psoriasis awareness is heightened, understood and supported. I look forward to following up with you all in San Diego, putting our heads together - and really enjoying you.
I have so much admiration for you all.
I thank you for representing the lives of so many.
With Love,
Melissa Sheehan

(Oh yes, and re-reading through this, please don't comment on how I should not feel guilt, yadda yadda. - I write that because I feel that, I know what I am capable of, and I really could have made a better effort. Don't get me wrong, I am not beating myself up, but I want you to know how FANTASTIC I think you all are, how WONDERFUL it was that you did what you did and I regret that I was not a part of that. The upside of this is the resolve this has set in me to do the above mentioned.)

[rosy3939]

It is still not to late to continue to write letters

[MelissaLynn]

I hope he didnt think I was kidding when I closed with "I'll be back"
Just got off the phone with NPF. Trying to out something together with MAYO CLINIC doing a Present on Goeckerman and just overall skin treatment for Psoriasis. I learned a lot from them.
Its looking good. Waiting to hear more. I think it will be important since Dr.s from all over the country will be there, to witness some other, "forgotten" treatment. Especailly for those that have been kicked off Biologics and are loosing hope.
Maybe my results will inspire other facilities to offer this program.
Especailly to those that really, really (as I did) need releif.
Fingers crossed.
Best,
Meliss.
Oh yeah, and guys, WRITE THE LETTERS. We are our own best voices. The template is out. Make PSORIASIS a word these people become very framilar too...

[Raynard_the_Fox]

Hey Melissa,

I already wrote the Govanator a letter. Got a letter in response from his office too. Was hoping it was really his signature on it but it wasnst just some rubber stamp. then again I doubt he can sit there and sign ever letter coming and going out of his office. And I am pretty sure he didnt read it himself either. But if they wrote back I know atleast someone on his staff did.

Just let us know if his return letter closes with "You have been terminated.' :D

-Fox

[FlakeyMatt]

MelissaLynn and everyone else out there it is our honor to have had the opportunity to represent all of you. It certainly is not feasible to for every NPF member to have been on the Hill

However, it certainly it feaslible that everyone writes there respective members of Congress. Please take the time to consider what these reps would think if they started getting votes from thousands of REGISTERED VOTERS! This is a great motivator for most politicians. SO please wrie

Check out the NPF's press release on www.psoriasis.org/home and be sure to include the following points:

1-Over the last decade, as NIH (National Institute of Health) funding increased by 148 percent, psoriasis research funding at NIH’s National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) actually decreased by 13 percent.

2-Current NIAMS spending on psorisis research equates to less than $1 per adult psoriasis sufferer

We are looking for the following from members of Congress

1-We would like to see a doubling of the current spending on psoriasis research to $8 million

2-Support an increase of NIAMS funding by 10% in 1995

3-Support the NIH Immuno Disease Research Plan

These lettters are vital to create some momentum against the inertia of the bloated governement bureaucracy.


The next event will be even better. We all have something to learn. The NPF in terms of organization, the volunteers in terms of presenting and me in terms of bathing:p !

Yours in P FlakeyMatt

PS A question for PJ Charming? Are you sure you have the right guy?

[Robi]

..................inaugural testing of the waters inside the Beltway. From the perspective of a hyper-active political activist, county election official, who is inside local, state and federal elected officials offices on a regular basis, I can let you in on the secret(not really so secret) weapon of attention getting for politicians. DELIVER A VOTING BLOCK. Since we are a national(euphymism for widely scattered) group our efforts would be best directed at the national level. I have seen estimates of up to 7 million P People possible voters in this nation alone. Add their families and friends and you have a powerful club to wield. Getting them all registered and voting on a regular basis, deciding on and aquiring candidates to deliver to, then flexing that "VOTER" muscle as proof, is the one and only way to influence politicains. It is the only fool proof way to attain your goals. Accomplishing that is another thing altogether. You can give money, you can call or e-mail, show them signed petitions, go to their office and even march on Washington, but you better have a roll of registered voters who vote. Otherwise, smile, handshake, clickflash bye bye see you later. Cynical but true. And that tact is not always a winner, because older "this is probably my last term" politicians are only interested in securing their personal legacy most of the time.

So, to whoever is up to that challenge, you better get busy. Get 'em registered, get 'em voting and get your agenda met!

PS Petitioners of any kind ARE crossed checked with voter registration rolls, they are public record.:D


VOTE VOTE VOTE VOTE, EARLY AND OFTEN!!!!!!!!!!!!!!!!!!!!!!!!!

[neese]

Originally posted by FlakeyMatt
MelissaLynn and everyone else out there it is our honor to have had the opportunity to represent all of you. It certainly is not feasible to for every NPF member to have been on the Hill

However, it certainly it feaslible that everyone writes there respective members of Congress. Please take the time to consider what these reps would think if they started getting votes from thousands of REGISTERED VOTERS! This is a great motivator for most politicians. SO please wrie



Thanks Matt :D

Hope to meet you some day.

I'll certainly write a letter.

Hugs,
Denise


I had to add something to this post....I thought the link would have the information...I'm not very "political" so i'm not sure who exactly i'm writing to....How would i get a name and address?? And everyone else that may have this same question.

Thanks!

[FlakeyMatt]

Agreed Denise I am sure our paths will cross at sooner or later


F.M.

[bella247]

Letters (http://www.psoriasis.org/resources/advocacy/contact_congress.php)


Anyone who has not written, it's of course never too late!!

Take care and smile

Bella

[neese]

perfect.

Thank you so much

[MelissaLynn]

Here it is- One year ago:
To you 29 that made representation of we -nearly 5 MILLION that suffer with Psoriasis.
To you 29 that made sacrifices- Great and selfless for the 40 THOUSAND NPF members
To you 29 that did all you could so that the voice of so many MIGHT be heard...
I am humbled, I am grateful and I am so PROUD and THANKFUL to you.

I wish I would have been there. I wish I would have done more. I most certainly WILL BE AT OUR NEXT CAPITAL HILL DAY!

Your efforts were GREAT and so appreciated and I, personally am ashamed I missed the event. Still, I now have a much better understanding of HOW VERY IMPORTANT this event is and will be that much better prepared for next year.
My thoughts and prayers were with you all. My wishes for a safe trip, an enjoyable time and an forum for which to speak were granted- and so I am indebted to you, my family.
You are right, there IS power in numbers and I feel I should have added to your numbers, to your voice and have lent my support.
The best I can offer is to tell you how INSPIRED I am by you 29 and how PROUD of you I am. I personally will actively recruit for next year. I have made good connections with the Mayo Clinic, my family and friends have a better understanding of this disease ad its severity and I WILL do my best so that Psoriasis awareness is heightened, understood and supported. I look forward to following up with you all in San Diego, putting our heads together - and really enjoying you.
I have so much admiration for you all.
I thank you for representing the lives of so many.
With Love,
Melissa Sheehan

(Oh yes, and re-reading through this, please don't comment on how I should not feel guilt, yadda yadda. - I write that because I feel that, I know what I am capable of, and I really could have made a better effort. Don't get me wrong, I am not beating myself up, but I want you to know how FANTASTIC I think you all are, how WONDERFUL it was that you did what you did and I regret that I was not a part of that. The upside of this is the resolve this has set in me to do the above mentioned.)

[bella247]

I am glad you followed through, and hope there will be more people with a similar attitude!!

29 people treaded a way, now its time for more to follow, and continue what was started one year ago.

Hope to see YOU there!

take care and smile

Bella