Capitol Hill Day: Successes and Failures

[TerpRubin]

Hey, all ...

I know I don't spend much time on this message board, so I guess I'm a relatively unknown character in here, but after attending my first Capitol Hill Day, I have a number of things I'd like to talk about, and I'm sure many of the 60 or so others have stories to tell, also.

I have heard some real horror stories from people over the last day or so from people whose representatives or senators were not very receptive to NPF needs. I suppose that makes me lucky, since I got rather positive responses from all the staffers I spoke with. Although, I have to admit, when I met with the staffer from Senator Mikulski's (D-MD) office, I felt like he had no clue what we were talking about. We did our best to educate him about the disease, but he did seem rather clueless for a good period of time.

But I think the best overall impression I made came over on the House side yesterday morning when I met with the Health Legislative Assistant in my congressman's office (Chris Van Hollen--D-8th MD). I don't know if it's because I prefaced the conversation by telling him that I had worked on Van Hollen's last campaign and that I'm looking forward to helping him run for Senate next year or if it's because he was genuinely interested, but I feel like I left with a strong feeling that the NPF may find the champion we're looking for in Maryland.

WONDERFUL NEWS: I just checked the status of S. 424 (The Arthritis Prevention, Control, and Cure Act of 2005), and Senator Sarbanes (D-MD) added his name to the co-sponsor list YESTERDAY. I can only assume that he did so after we met with his Health L.A.!!!! Even though it does not take much for a Senator to co-sponsor a bill, it seems we had a direct impact!!!!!!!!!!!!!!

Thank you from all of us who couldn't attend!!!! We really appreciate the time, the effort and the expense it took to get you to D.C.

Annie

[rosee_posey]

That's great news! Thanks for the update!

[rosy3939]

Dear friends,

I just got back to the office today Thursday 4/14. I have not had a good change to reflect back on the wonderful experience we call Capital Hill Day. This must I do know it was a wonderful experience and return totally energized. The old friends I saw again and the new ones I met were great.

To see those who were in great pain and discomfort walking the halls of our congressional office buildings to make there appointments. They were an inspiration. To meet fellow suffers and listen to their stories of this disease, in pain they were there to let their elected officials know of their plight and that of 6+ million other sufferers who couldn’t be there.

It was inspiring to see young adults fighting for funding and recognition of our disease so that other particularly younger than themselves won’t have to suffer like they have. I met family members who were there to champion there children or their parents. I met a wonderful young lady who there to support her friend and lobbied her representative on her behalf.

To everyone who was worry about me and my pains and tribulations, thank you. I have been going so rough times lately with my disease as I am in a major flare. Only those that suffer with this disease truly understands what we go through but we are blessed with many family and friends who truly try.

To the National Psoriasis Staff who planned and pulled everything together for Capital Hill Day thanks to you all of you. Those who came to Washington and those who worked behind the scenes to make it a great experience for all. . A special note to Joey, you done good so you get a pass until Monday without me complaining to you about what we can do better and why we aren’t moving along at a faster pace (remember Joey my life expectance is a lot shorter than yours).

Last but not least a solemn pledge to each and every one of you. I will do every thing I can to fight for the cure for psoriasis and psoriatic arthritis. I will be relentless and determined in this quest. I will beg, cajole, badger, plead, annoy, bother everyone on these boards to participate to the level they can and then some in the fight against that which pains us, disfigures us, ails us!

Mitch Rosenberg

[ladybloede]

Now I wish even more that I could've gone!

That's great about the MD guy adding his name!

[ouchyk]

Nice avatar terprubin ;)

All three of my meetings were nothing short of excellent. I found all the aides more than willing to help in any way they could as well as fellow NPF members and staff.

Senator Kennedy's power meeting was almost overwhelming with information, direction and contacts. Incredible. I'm glad that there were three other people in the room with me taking notes! Pretty sure I sat there with my mouth opened in total awe. WOW.

I still have follow up to do with all three offices, if there is anyone here from MA who would like to help, please PM me. We are far from finished.
Rep. Lynch & Senator Kennedy are co-sponsors of the Arthritis Prevention, Control and Cure Act of 2005, Kerry has not signed on as of today, so that's my mission for now.

Josh, great work getting Senator Sarbanes (MD) on board! A good majority of the people who went to CHD were not from the message boards so I'm not sure how many will post.

Joey, Again, great job & thanks for working so hard for all of us. I have a few suggestions for next year...sneakers and jacuzzis come to mind :)

Karen

[jshearer]

Just wanted to let everyone know that we sent out a press release about the letter-writing campaign and Capitol Hill Day.

You can find it here, on Yahoo. (http://biz.yahoo.com/prnews/050414/sfth120.html?.v=1)

More than 4,800 letters were written in the 48 hours after we emailed the Action Alert to our Members and friends.

If you have friends or family who would write letters, please email them the link to our Web site (www.psoriasis.org) and ask them to join us in asking Congress to increase funding for psoriasis research.

This is a great compliment to our Capitol Hill Day meetings.

The basic research that happens at the National Institute of Arthritis and Musculoskeletal and Skin Diseases will lead to a better understanding of the genetics and mechanism of the disease. In turn, this will lead to better treatments and, eventually, a cure.

Taking action through our letter-writing campaign is quick, easy, and effective. Please spread the word to friends and family.

Thanks,
Joey

[TerpRubin]

For all you CHD participants ...

REMEMBER TO WRITE THANK-YOU NOTES TO THE AIDES YOU MET WITH. I (finally) got around to writing mine last night and dropped them in the mail this morning. :D

The more dialogue we can open up with our representatives in DC, the better off we will be. I know I plan to follow up relatively soon ... Especially if my Congressman hasn't signed on to co-sponsor the Arthritis Prevention, Control, & Cure Act yet!

--Josh

[grannyfranny]

Is there a way to find out if reps from each state signed. I sent letters but have not heard from anyone.
thanks

[rosy3939]

Granny,

If you go the www.arthris.org and you click on advocacy and stroll down to the Atrhritis, Prevention, Control and Cure Act 2005 it will list all who have singed onto the bill. There are even four or five members who sign on as of yesterday.

Mitch

[ouchyk]

Granny,

Here is a link to see who has signed on and also to read the bill itself, which I personally feel is important.

http://thomas.loc.gov/

You can type in the keyword ~ Arthritis Prevention, Control and Cure Act of 2005.

Wheels are in motion for the other two pressing issues, I'm sure Joey will keep us all in the loop as headway is being made. I'm very optomistic.


Karen

[jshearer]

Before everyone goes running all over the internet, I just wanted to make sure that everyone knows that information about the Arthritis Legislation, including full text and cosponsors, is available right here on the National Psoriasis Foundation Web site (http://capwiz.com/psoriasis/issues/bills/). And it's updated each and every night.

Check it out.

Thanks,
Joey

[ouchyk]

bump for a fellow member looking for info....here ya go! :)

Karen

[Kimbercat]

Josh,

I'm afraid I'm a bit slow to get my responses and thanks back due to some insanity on the homefront :rolleyes: , but I promise I will be doing so, and will continue to be involved.

I just wanted to give you personally a big thanks from the whiner who didn't think she could make it back to the bus that day...lol. :p :) Thanks for your assistance and encouragement. It really made a difference to me.

[TerpRubin]

Kim:

Next time, wear more comfortable shoes!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !

[mdgirl]

Kim,

I'm glad to hear your feet are ok. You did good.

Diane