Congressional Update

[jshearer]

On Friday, we posted a news story on the Foundation Web site (http://www.psoriasis.org/news/stories/2005/20050610_dearcolleague.php) detailing our collective efforts to increase federal funding for psoriasis research, including the Dear Colleague letter (http://www.psoriasis.org/files/pdfs/advocacy/2005_dear_colleague.pdf) that we circulated in the House of Representatives.

Twenty-five members of the U.S. House of Representatives publicly voiced their support for psoriasis research by signing this Dear Colleague letter. This letter gave Chairman Regula and Ranking Member Obey some extra encouragement to consider the strong Report Language, related to psoriasis research, which was submitted to the Labor-HHS appropriations subcommittee. As the article (linked above) explains, this subcommittee will be coming out with its report very soon.

Please make sure to thank your representative if you see his or her name on the list of reps who signed the Dear Colleague. You can find email addresses and phone numbers for your U.S. reps on the Foundation Web site (http://www.capwiz.com/psoriasis/dbq/officials/).

The number of representatives coming together to support psoriasis research truly is unprecedented, and is a testament to the efforts of the psoriasis community. Although we will continue to build on these efforts, I hope all of you will take a moment to reflect on how far we've come. On Capitol Hill Day (http://www.psoriasis.org/advocacy/chd/2005.php), volunteers put a personal face to this disease as they visited more than 80 congressional offices. These volunteers discussed the issues that are important to the psoriasis community, and identified supporters and potential champions in Congress. Through our letter-writing campaigns, 526 of the 535 members of Congress (98%) have received letters educating them about psoriasis and the importance of research. The National Psoriasis Foundation submitted testimony to the Labor-HHS appropriations subcommittee, and then followed up with Report Language. The Dear Colleague letter (linked above) rallied support in the House or Representatives.

And the most encouraging "fact" of all: since April, nearly 3,000 volunteers have participated in these political advocacy efforts.

All of these separate campaigns, events, letters and volunteers are united under the banner of raising awareness about psoriasis and advocating for increased federal funding for research. We have come a long way in the past two years, but we've got a long way yet to go. It's important that we remember our successes as we move forward and tackle new challenges.

Please feel free to post your thoughts.

Thanks,

Joey

[RichJ]

hi joey,
thank you for sharing that and for all that you do for the p and pa people

have a wonderful day all

richard

ps thank you all that helps do stuff to get funding for p and pa people

[Ironchef]

Holy cow! This is a great step! Thanks NPF for letting us help in the petition and for informing us of this great news! Let's hope that report is positive!

[Kimbercat]

Joey:

Any suggestions on how to approach a rep whose office said the rep would sign the letter, but their signature is not on this? :(

[SandraJean]

Hi Joey,

Thanks for this post. I checked to see if my Representative signed (His name is Randy Kuhl from New York) and his name was there. I'm so glad!!!

Thanks,
Sandy

[littleangel]

my reps on there too :)
and the LA i met with in April emailed me to tell me that they were signing on.
yaaaaaaaaaaay :D

[abbyroad]

Congresswoman Lynn Woolsey sent me an email a few days ago to say she signed it! Yahoo!!
I sent her a thank you as well. This was so wonderful to be able to send emails and letters out to our reps with your help...it made it so easy.
Thanks,
Abby :)

[khorath]

I was glad to see the positive results :D but sad to see that no one from Illinois signed the letter :( .

I sent letters (email and hard copy) but I guess to no avail...

Kudos to everyone who have worked so hard to make this possible!!!!!!

[nitegale]

Thanks Joey for bringing that to our attention. I did write Congresswoman Carolyn McCarthy expressing my heartfelt thanks for her support.

Marie :)

[jshearer]

If you wrote your representative but he or she didn't sign the letter, please don't be discouraged. I'll be honest with you, it can be tough to break through "the white noise"--all the requests that these congressional offices receive--and get your representative to focus on the issue that matters most to you. This is why it's important to encourage your friends and family, anyone who lives in your same congressional district, to write so your representative receives several messages related to psoriasis. You can make your email or letter five times more effective simply by getting five other people to join you in writing.

Twenty-five representatives is a good start, but we'll have more next time. And the time after that, we'll have even more supporters. And so on, and so on.

If you are disappointed that your representative did not sign the Dear Colleague letter, especially if he indicated that he would, you should send him a polite note asking why he didn't sign and encouraging him to support psoriasis research in the future. We need to put psoriasis on every representative's radar, and the best way to do that is with repeated contacts. As the saying goes: "Gentle pressure, relentlessly applied."

Even if your representative didn't sign the Dear Colleague letter, you advanced our cause if you contacted him or her. The fact that you did something makes it more likely that your representative will support us in the future. Every time you send your representative or senators a message, you make a difference. Period.

So thank you to everyone who has participated in these "political advocacy" efforts in the past two months--all 3,000 of you!

Joey

[kkellogg]

Thanks for the update Joey... though I am bummed that Diaz-Balart did not sign on. I will keep up the gentle pressure.

Fight the P!

Krista

[jshearer]

Krista,

Just make sure it's relentlessly applied :D

[kkellogg]

Hope to get a letter or email out to them by the end of today...

[Kimbercat]

I just thought I'd share a copy of the email I sent today to my House Representative as a follow up to the "Dear Colleague" letter:

June 8, 2005


Dear Representative Baird:

I was able to see a copy of the "Dear Colleague" letter dated 6/8/05, which was circulated by Rep. Tim Murphy and Rep. Stephen Lynch requesting an increase in funding for FY2006 for psoriasis and psoriatic arthritis research from the National Institutes of Health (NIH) and National Institute of Musculoskeletal and Skin Diseases (NIAMS). I was disappointed to find that your signature was not on this letter.

I made a special trip to Washington DC, and met with Ms. Paula Burg in your office on 4/11/05 in regards to this issue, as well as several other matters regarding legislation and funding for these debilitating diseases. I also followed up by speaking with Ms. Burg on the phone on 5/27/05, and responding to her questions by leaving a message with your receptionist, as well as a voice mail for Ms. Burg, and emails to both you and her on 5/31/05. I feel that this is a very serious issue that requires your attention and support.

As Ms. Burg was out of the office that day, my call was returned by Rachel from your office, assuring me that you would be endorsing this important letter, which I was very pleased to hear. As a constituent, I'm wondering if you can offer me an explanation as to why this did not happen. I would also like to encourage you to support psoriasis and psoriatic arthritis research in the future.

More than 5 million Americans, including an estimated 12,000 in your district, have been diagnosed with psoriasis and/or psoriatic arthritis. Psoriasis is a common, chronic, immune-mediated skin disease. A National Institute of Mental Health-funded study found that psoriasis can cause as much physical and mental disability as cancer, arthritis, hypertension, heart disease, diabetes and depression. 10-30% of psoriasis patients develop psoriatic arthritis, a painful and potentially destructive joint disease. Thank you for any assistance and hope that you can offer to those of us who suffer with this disease by supporting future legislation and funding requests specific to these diseases.

Respectfully,

"Gentle pressure, relentlessly applied." :D

p.s. Just a note: I received an autoreply from Rep Baird's office requesting I use the email form on his website, so those of you writing may want to start there.

[kkellogg]

Great letter Kim!

[jshearer]

We also put out a press release (http://biz.yahoo.com/prnews/050614/sftu113.html?.v=12) about the Dear Colleague letter and our other advocacy efforts.

Psoriasis Foundation Advances Support in Congress for Psoriasis Research Funding
Tuesday June 14, 8:45 pm ET

PORTLAND, Ore., June 14 /PRNewswire/ -- With the active support of the psoriasis community, the National Psoriasis Foundation is making significant progress toward increasing federal funding for psoriasis and psoriatic arthritis research.

Following two National Psoriasis Foundation initiatives -- Capitol Hill Day and a national letter-writing campaign -- two congressional champions for psoriasis research funding stepped forward. In May, Reps. Stephen Lynch, D-Mass., and Tim Murphy, R-Pa., initiated a "Dear Colleague" letter in support of increased psoriasis research funding at the National Institutes of Health (NIH). The letter was signed by 25 representatives and sent to the chairman and ranking member of the House Appropriations Subcommittee on Labor, Health and Human Services and Education. It echoed testimony submitted by the National Psoriasis Foundation to the same subcommittee.

The Psoriasis Foundation is now awaiting confirmation of language in House and Senate reports supporting increased federal funding of psoriasis research. The reports will accompany the House and Senate versions of the Labor, Health and Human Services and Education appropriations bills for fiscal year 2006. The House report is due to be completed within a week. The Senate will release its version later this summer.

"It is extremely important that we increase funding for research to treat and cure this serious disease," said Congressman Murphy, who co-led the "Dear Colleague" letter with Rep. Lynch.

Lynch concurred. "The keys to beating this debilitating disease are increased research funding, understanding and greater awareness," he said. "The National Psoriasis Foundation has been a tireless advocate in Washington on behalf of Americans with psoriasis and psoriasis-related arthritis. I am honored to join them in their effort to build support on Capitol Hill."

The inclusion of psoriasis-related language in the two reports followed the efforts of volunteers who visited more than 80 congressional offices during the second annual National Psoriasis Foundation Capitol Hill Day and nearly 3,000 psoriasis advocates who contacted their representatives through the National Psoriasis Foundation online action center. Over a short period of time, these concerned citizens rallied to send more than 7,000 e-mails and letters to their representatives and senators.

In August, which is Psoriasis Awareness Month, the Psoriasis Foundation will hold its first annual Local Lobby Week. During the week of Aug. 15, hundreds of people across the country are expected to visit the district offices of their senators and representatives, educating them about psoriasis and the importance of research. Another component of Psoriasis Awareness Month is the National Psoriasis Foundation® 2005 National Conference, Aug. 5-7 in Boston, Mass., which will feature advocacy training sessions.

The National Psoriasis Foundation extends its appreciation to the 25 representatives who demonstrated their commitment to federal funding of psoriasis research by signing on to the "Dear Colleague" letter:

Michael Capuano, D-Mass.; Donna Christensen, D-Virgin Islands; Tom Davis, R-Va.; Bob Filner, D-Calif.; Barney Frank, D-Mass.; Jim Gerlach, R-Pa.; Gene Green, D-Texas; Maurice Hinchey, D-N.Y.; Darlene Hooley, D-Ore.; Steve Israel, D-N.Y.; Dale Kildee, D-Mich.; Barbara Lee, D-Calif.; Sheila Jackson Lee, D-Texas; Stephen Lynch, D-Mass.; Jim Marshall, D-Ga.; Carolyn McCarthy, D-N.Y.; James McGovern, D-Mass.; John McHugh, R-N.Y.; Michael McNulty, D-N.Y.; Tim Murphy, R-Pa.; Eleanor Holmes Norton, D-D.C.; Ron Paul, R-Texas; David Price, D-N.C.; Henry Waxman, D-Calif.; Lynn Woolsey, D-Calif.

[ouchyk]

Thanks for the update's Joey, hopefully people will join in with this most important continuance of advocacy that the foundation and fellow members have worked tireless on.

" In August, which is Psoriasis Awareness Month, the Psoriasis Foundation will hold its first annual Local Lobby Week. During the week of Aug. 15, hundreds of people across the country are expected to visit the district offices of their senators and representatives, educating them about psoriasis and the importance of research. Another component of Psoriasis Awareness Month is the National Psoriasis Foundation® 2005 National Conference, Aug. 5-7 in Boston, Mass., which will feature advocacy training sessions. "

I look forward to more updates as the time approaches.

My wish is that everyone who suffer's will be pro-active and help themselves as well as our fellow sufferer's.


Research is key. We need a cure.

Karen

[jshearer]

I have some great news coming out of the U.S. Senate!

Late last week, we learned that the Senate Labor-HHS-Education Appropriations Subcommittee (http://appropriations.senate.gov/subcommittees/labor/topics.cfm?code=labor) has included some powerful language related to psoriasis in the report accompanying the FY 2006 Labor-HHS-Education appropriations bill. The National Psoriasis Foundation proposed specific language to the subcommittee, and they used our submission (nearly word for word) in their report. By using our strong language, the Senate has effectively asked the National Institutes of Health (http://www.nih.gov/) to increase and expand their efforts related to psoriasis and psoriatic arthritis research.

Our proposed "report language" relates to the Centers for Disease Control (http://www.cdc.gov/) and several different institutes within NIH. For example, from the National Institute of Allergy and Infectious Disease (NIAID) (http://www.niaid.nih.gov/default.htm) section:

“Psoriasis-- Psoriasis is a common, chronic, immune-mediated skin disease. The Committee urges NIAID to support additional research on psoriasis and psoriatic arthritis pathogenesis, research to develop diagnostic tests for psoriatic arthritis and clinical research to identify new safe and effective therapies for these diseases."

And from the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) (http://www.niams.nih.gov/) section:

"Psoriasis-- Ten to 30 percent of psoriasis patients develop psoriatic arthritis, a painful and potentially destructive joint disease. The Committee urges NIAMS to support additional genetic research to identify the genes responsible for psoriasis susceptibility, basic research to understand the mechanism of disease and clinical research to identify new safe and effective therapies for these diseases."

We'll provide a link to the entire report when it becomes available online.

Thanks to everyone who participated in Capitol Hill Day and our letter writing campaigns! Congress is beginning to recognize the seriousness of psoriasis and psoriatic arthritis. Please sign up for Local Lobby Week (http://www.psoriasis.org/advocacy/lobbyweek/) today, and help keep the psoriasis community and our issues front and center with Congress.

Best,
Joey

[ericm]

Great job Joey and all the attendees of CHD. I'm happy to say that my local congressman is one of the signer of "Dear Colleague" letter, Mr. Bob Filner. I will send him another thank you notes for his continued support for psoriasis research funding.

eric

On Friday, we posted a news story on the Foundation Web site (http://www.psoriasis.org/news/stories/2005/20050610_dearcolleague.php) detailing our collective efforts to increase federal funding for psoriasis research, including the Dear Colleague letter (http://www.psoriasis.org/files/pdfs/advocacy/2005_dear_colleague.pdf) that we circulated in the House of Representatives.

Twenty-five members of the U.S. House of Representatives publicly voiced their support for psoriasis research by signing this Dear Colleague letter. This letter gave Chairman Regula and Ranking Member Obey some extra encouragement to consider the strong Report Language, related to psoriasis research, which was submitted to the Labor-HHS appropriations subcommittee. As the article (linked above) explains, this subcommittee will be coming out with its report very soon.

Please make sure to thank your representative if you see his or her name on the list of reps who signed the Dear Colleague. You can find email addresses and phone numbers for your U.S. reps on the Foundation Web site (http://www.capwiz.com/psoriasis/dbq/officials/).

The number of representatives coming together to support psoriasis research truly is unprecedented, and is a testament to the efforts of the psoriasis community. Although we will continue to build on these efforts, I hope all of you will take a moment to reflect on how far we've come. On Capitol Hill Day (http://www.psoriasis.org/advocacy/chd/2005.php), volunteers put a personal face to this disease as they visited more than 80 congressional offices. These volunteers discussed the issues that are important to the psoriasis community, and identified supporters and potential champions in Congress. Through our letter-writing campaigns, 526 of the 535 members of Congress (98%) have received letters educating them about psoriasis and the importance of research. The National Psoriasis Foundation submitted testimony to the Labor-HHS appropriations subcommittee, and then followed up with Report Language. The Dear Colleague letter (linked above) rallied support in the House or Representatives.

And the most encouraging "fact" of all: since April, nearly 3,000 volunteers have participated in these political advocacy efforts.

All of these separate campaigns, events, letters and volunteers are united under the banner of raising awareness about psoriasis and advocating for increased federal funding for research. We have come a long way in the past two years, but we've got a long way yet to go. It's important that we remember our successes as we move forward and tackle new challenges.

Please feel free to post your thoughts.

Thanks,

Joey

[jshearer]

I want to encourage people to visit the Local Lobby Week page (http://www.psoriasis.org/advocacy/lobbyweek/).

We need to keep psoriasis and psoriatic arthritis front and center with Congress. Please go to the link, check out the cool map, and then sign up.

It’s all relatively quick and easy, just follow the 5 steps. All the information and materials you need can be downloaded from the Web site.

Please let me know if you have questions.

Thanks,
Joey