5 Million Americans Need 5 Minutes of Your Time

[jshearer]

The National Psoriasis Foundation, for the first time ever, is launching a nationwide letter-writing campaign. We need your help to educate Congress about the importance of federal funding of psoriasis research.

If research for a cure is important to you, please take a few minutes to spread the word. Our powerful new Action Center makes it easy to make your voice heard! It will take less than five minutes to contact your representative and two senators in Congress on behalf of the more than five million Americans diagnosed with psoriasis and/or psoriatic arthritis.

Take Action Now! (http://capwiz.com/psoriasis/issues/alert/?alertid=7318706&type=CO)

And feel free to share the (optional) "personal story" that you include in your letters to Congress on this thread.

Thanks,
Joey

PS-Once you click on the link, please take advantage of the feature that allows you to spread this message to friends and family.

[SandraJean]

bump..........

[nitegale]

Hoping that all of you attending Capitol Hill Day and writing letters will be successful.

One by one
You'll hear their stories
Their plights and struggles
Made to order

In evey hall
And every corridor
An emotional song
Will capture the hearts
Of many who've been wrong

From New York to California
They will get an earful
Of struggles and burdens
And many are tearful

Let's hope they will listen
And come to a conclusion
That this dreadful disease
Deserves more inclusion!

Good Luck!
Marie

[luvwinnie]

I sent it to many friends and relatives.

[hadasaguilar]

What is the purpose of educating congress about my disease? What is the desired outcome? Is it to enact legislation to make it easier for drug companies to do research and market their products?
I would like to know what the desired result is to know whether or not I would like to participate. Please post here or PM me.
Thanks,
H

[makeitgoaway]

What is the purpose of educating congress about my disease? What is the desired outcome? Is it to enact legislation to make it easier for drug companies to do research and market their products?
I would like to know what the desired result is to know whether or not I would like to participate. Please post here or PM me.
Thanks,
H

The ultimate outcome is additional research funding with an end goal of curing this disease.

Please support this!

[jshearer]

The reason why we want to educate Congress about psoriasis and psoriatic arthritis is that they funded $28 billion of medical research last year through the National Institutes of Health. Your members of Congress are the largest funders of medical research in the history of the world. If we want more money spent on figuring out the genetic causes and mechanisms of these diseases, we need to talk to them. It's as simple as that.

There is nothing about drug companies in our messaging for Capitol Hill Day or our letter-writing campaign to Congress.

If you actually follow the Take Action (http://capwiz.com/psoriasis/issues/alert/?alertid=7318706&type=CO) link, you'll come to a page with the following:

Your senators and representatives voted to spend $28 billion on medical research last year. The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) spent just $5 million on psoriasis research—less than $1 per American with the disease. Is research for a cure important to you?

The National Psoriasis Foundation, for the first time ever, is launching a nationwide letter-writing campaign, and we need your help to let Congress know that federal funding of psoriasis research is important to you.

Please take a moment to write to your representative and two senators. It will take less than five minutes, and five million Americans need your help.

If you click through the links, you can find the text of the letter that will be sent to Congress. In fact, there's space provided for you to enter your own comments.

If you want to learn more about our legislative efforts, please explore our Web site, www.psoriasis.org.

HERE (http://www.psoriasis.org/resources/advocacy/capitol_hill_day.php?) is a good place to start.

Thanks,
Joey

[magnetik]

Just thought I'd share my personal letter to Congress:

I have had psoriasis for over 12 years now, and every day is difficult. The endless searches for a medication that works, the cumbersome applications of medications in hopes that they will work, and the physical, mental, and emotional issues that come with psoriasis make every day a trying one.

I was also diagnosed with psoriatic arthritis 3 years ago. Some days the pain is bareable, some days it's excruciating, and others it is debilitating. No medications are working for me any longer and some days, it's hard to even get out of bed.

As hard as my life is living with psoriasis and psoriatic arthritis, my greatest hope is not for a cure for myself (which would undoubtedly be a blessing), but that my daughter will not have to suffer these conditions; but if she does end up developing them, there will be a cure to meet her at that time.

PLEASE HELP US IN FUNDING RESEARCH TO FIND A CURE FOR PSORIASIS!

[dmedonis]

Now age 48, I have suffered from psoriasis for 40 years. I have spent most of my life dealing with the pain, itching, flakes and shame associated with this disease. I never wear shorts or short sleeves during the hot, humid summer in metropolitan Detroit, because it's simply too painful to deal with the looks, stares, comments. Patches of skin covered with silvery flakes, lesions and bloody scabs from itching make life miserable, and make intimacy difficult at best. Eight months ago, I was diagnosed with psoriatic arthritis. I live with fatigue and pain every day of my life. Some days I groan and wince only occasionally, and some days I take a narcotic pain medication to get through the day. I drop things in the early mornings and late evenings because of my stiff fingers. I have to pick them up bending with an aching spine that already shows degenerative changes.

I make my living using a computer, and my pleasure and passion is playing the piano. So, after careful evaluation of the risk versus benefit with my doctor, I self-inject an expensive biologic immuno-suppressive medication twice weekly, because of its promise to arrest further joint destruction, and to relieve symptoms of my psoriasis and psoriatic arthritis. I remain terrified of its potential side effects and its long term ramifications. I am one of the very fortunate who have insurance which pays for such a medication, otherwise I would be unable to use it.

Clearly, more research is desperately needed. Millions across the U.S. suffer from psoriasis and psoriatic arthritis. Many of them are your constituents. I am one of them. I beg you to support the funding increase.

Doug

Doug,

Diplomatically or beautifully put.

Annie