Write a Letter to Congress!

[jshearer]

First of all, a big THANKS to everyone who has taken positive action and encouraged Congress to increase research funding for psoriasis and psoriatic arthritis. I am pleasantly surprised at the amount of interest this effort has generated. Anytime you begin a grassroots movement, it takes time to create a solid foundation. Creating a network that can reach every Member of Congress can be especially difficult.

2004 marks the first year that the National Psoriasis Foundation has organized a Capitol Hill Day. Over the next week, I will schedule face-to-face meetings between members of the psoriasis community and more than 30 congressional offices—the people that control the government purse strings. Now, these are 30 more face-to-face meetings than we had a year ago, but with 535 Representatives and Senators working on Capitol Hill we have plenty of room to grow.

The Foundation understands that traveling to Washington, DC takes a substantial investment of time and money, but it’s a worthwhile investment for those who can make it. To ensure that absolutely everyone has the opportunity to get involved, we’ve added information to our Web site on how YOU can send Congress a message from your very own home.

1) Please visit http://www.psoriasis.org/resources/advocacy/contact_congress.php

2) Write a letter to Congress (use our sample if you want)

3) Mail/fax it to your Representative and two Senators

4) Encourage two, three, or ten others to send letters too

As a grassroots movement, the drive for this effort must come from within the psoriasis community. Please write a letter. And please encourage others to do the same.

Thanks again, and please don’t hesitate to contact me with questions or concerns.

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

PS-When you write a letter, feel free to respond to this post and let everyone know that you’ve made the decision to get involved. If you want to share what you’ve written, that’s great too. We’re counting on YOU to keep this thread at the top of the message boards. And we’re counting on you to flood Congress with your letters.

[rosy3939]

Hi all, I have been advocating the need to write so I am posting my letter. Please understand tha tis is going to both US Seantors and my Congressman.

The Honorable Steven Rothman
US House of Representative
Washington, DC 20513

Dear Congressman Rothman,

MY name is Mitch Rosenberg and I have both psoraisis and psoriatic arthritis. I have been suffering with psoriasis for over thirty five years and psoritic arthritis for over five years. I am writing because we need your help in making sure that psoriasis and psoriatic atrhritis patients get the proper threatment and respect they need and deserve. Psoriasis sufferers often feel like lepers. The skin is the body's largest organ and if it looks diseases, the evidence is hard to hide.

There are over five million people in the US alone who have this imune disorder that causes affected skin cells to reproduce ten time faster than a normal one, building-up inflammed scaley lesions that shed. Psoriasis generally does not kill but engages patients and physicians in a day-to-day struggle for near normalcy. For skin that does not itch, hurt, burn, turn red and angry and leaves scales on clothing, furniture and elssewhere. Thwenty percent of all diagnosed are children. Too many with psoriasis have considered suicide. In a recent study fifty percent said they would choose a potentiall life-threatening therapy if it could clear their skin. I know I would in a heartbeat and I am currently on a powerful and dangerous drug call cyclosporine to get that relief!

Psoriatic Arthritis which I have suffered with for the past five years, is a disease which mirrors Rheumatoid Arthritis. This disease can rob you of the ability of doing lifes simple tasks like dressing yourself without help from others.Opening a car door, driving and self-sufficient, life little things we take for granted. It can rob you of the ability to support yourself and your family. Ten percent of all people diagnosed with psoriasis will develop Psoriatic Arthritis.

One the past decade there has been major improvemnet in treatments for this disease. A new class of drugs called Biologics with names such as Enbrel, Remecade, Raptiva, Amevive and Humira are giving great hope to uor community but too often medical treatment plans prescribed by our doctors are being rejected by insurance company clerks. To add insult to injury he cost of these new drugs are prohibiting many middle class Americans from getting the relief they need.

I am writing to seek you support in addressing the urgent need for increased fereral research funding for psoriasis and psoriatic arthritis. Specifically, I urge you to support and vote for a 10% increase in Fuscal Year 2005 funding for the National INstitue of Arthritis and Musculoskeletal and Skin Diseases (NIAMS). This institue within NIH needs $551.2 million to conduct adequate research on the basic causes, incidence, treatment and preventio of some very costly and debilitating diseases, including psoriasis!

The best hope for the more than five million Americans liveing with psoriasis and/or psoriatic arthritis is increased federal research funding. I look forward to your reply.

Sincerely,


Mitchell Rosenberg
Englewood, NJ 07631


Note: original has been corrected for spelling and grammer. I gave congressman Rothman my address and phone number. This is what I have written. Please construct you own letters and send them!

[roblin]

I wrote letters to both Democrat Louisiana Congressman/women today! Used the sample letter...thanks!

I wonder if they will respond??

Robert D. Taylor

[ouchyk]

I emailed letters on April 7th To Kerry, Kennedy and Lynch. I cc'd copies to Joey...I have not heard a reply from my Massachusetts representatives!:( Hopefully they will support us.


Karen