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. 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]

THANK YOU!

[bella247]

Is there any way to post one of these in the coversations section as well??


Thanks, take care and smile

Bella

[slowe]

I'm sending letters today. I'm also going to have my friends and family write as well. Thanks for the info on where to get the address of my rep & senators.
Sue

[rosy3939]

Good job Sue. It is up to us the member of NPF to take some responisbility for our own conditions. Sending a letter or two, making a phone call these are simple actions take lake very little time but can have a great impact.

The orther tink you are doing is also very important. Have love ones and other family member writting to is important. This disease not only impacts us but also those we love and those who love us.

Thank you so much from psoriatic to another.

Mitch

[jshearer]

I'm sure that every individual with psoriasis can come up with a dozen or more personal reasons why he or she should contact Congress. Those reasons are very important. But here are a few more that relate specifically to problems Congress can address.

Here we go...

1) About 56 MILLION hours of work are lost each year by people who suffer from psoriasis. This is 56 MILLION hours of lost pay to people in OUR community. This is 56 MILLION hours less work towards the productivity of America's economy;

2) Between $2 BILLION and $3 BILLION is spent each year to treat psoriasis. I'm sure there are many other things that Americans with psoriasis would rather spend their money on; and

3) The federal government currently spends less than $1 per American with psoriasis on researching this disease. Just looking at the statistics above, it is clear that this $1 figure is FAR TOO LOW! Spending less than $1 per person on a disease that costs $2-3 BILLION (just on treatment!) and 56 MILLION hours of lost work doesn't make sense.

If the psoriasis community wants and expects a cure, less than $1 per American with psoriasis is FAR TOO LOW.

The psoriasis community needs YOUR help to raise that number. Write a letter and send a message to Congress. Everyone has plenty of reasons to write and plenty of important things to say, but I thought a few more couldn't hurt...

Visit: http://www.psoriasis.org/resources/advocacy/contact_congress.php

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

[chaimFL]

Those are very compelling facts! Wonderfully written Joey!

Perhaps people can post letters they have written to give others some ideas just in case tyey are suffering from writers block.

[Kimbercat]

Whew!...I can finally say my letters are written, and going out in today's mail! :) ....guess I'm allowed back on here again...:D Thanks so much to our support group leader, krmitchell, for forcing us to get motivated and JUST DO IT!!!

Kim

[bella247]

just wanted to bump this up, good luck everyone!!!

Take care and smile

Bella

[khorath]

I sent my letters.

I also invited my Senator and Representatives to attend our next support group meeting. I'm not holding my breath on that one, but I wanted to at least let them know that they are welcome!!!!!

[rosy3939]

Khorath,

That was a good idea. Even if your reps can't make it hopefully they will send a staff member. Most times it the staff member you can get the most done until there is a photo-op available for the elected offical.

Chaim your idea to have some people post there letter is a real good one. i have posted mine hopefully you wll lead by example. I am sure it will be well written and inspiring. Please do post yours!

Mitch

[chaimFL]

I tried to attach this as a word document, but it would not allow me to do so.

This is a letter I wrote a couple of days ago after Joey posted the facts. I'm not very happy with it, but I haven't had much time to sit back and read, edit and add/subtract material. Any criticism will be appreciated.

Sorry for the long post.

Dear Senator Nelson,

I am taking a brief moment from my day to write you regarding federal funding for clinical research and advancement for a condition that I have suffered with for 15 years. I have written letters to you in the past regarding various issues and I greatly appreciate the time you take to read my letters as I have always received personal responses from you.

I would like to start by describing how I was diagnosed and what has transpired over the years (I will attempt to be brief). It started when I was around the age of 13 with an intensely itchy scalp and what I thought was scabs from my scratching and picking. I went to the family dermatologist who thought it would go away if I would just stop scratching. It was his opinion that my itchiness and scabs were the result of a bad habit. I attempted yet failed to have the ability to ignore the intense itch. I was then prescribed a topical steroid that helped tremendously, but it was a quick and very temporary fix. I used these topical steroids for a few years, just assuming that I had a case of severe dandruff.

Around the age of 18 I developed a red scaly spot on my back so I went back to the family dermatologist to show him. I would have never guessed that my scalp and this spot were related and it seemed that my dermatologist did not link the two either. I was diagnosed with eczema and given a topical steroid cream to put on the red patch. The patch did clear up, but more appeared. I could clear most of them, with some returning and others staying away, but eventually I had many spots and I could not keep up with the treatment. My case wasn’t that bad so I ignored it for a few more years.

Around the age of 22 I noticed more spots appearing almost every day. I went to a new dermatologist, who confirmed that I had psoriasis. This was a diagnosis that I had given myself by this point, but it was now confirmed. My psoriasis was spreading like wild fire. I was given an array of creams, foams, solutions, and even a steroid laced tape. I later found out that steroids will clear you nice and quick, but it can cause the psoriasis to rebound worse once treatment is stopped. By now I was almost 40% covered in psoriasis lesions.

I guess now is a good time to tell you that I had sworn off shorts, pools, the beach, tank tops, sun bathing and anything else that would reveal the horror that was my skin. I did not totally loose my social life, but it was severely damaged. I gave up on treating my psoriasis, but it was still there and not going away. I have been through depression and discrimination because of this condition and will continue to do so over the years. You see it’s important to know that there is no cure for this condition. As a matter of fact it is still unclear as to the exact cause. It seems to be autoimmune in nature, but there is a vascular link that is being researched as I write.

The medications that we use to treat severe cases have potential for very serious side effects, yet we take to the risk just to add some normalcy to our lives. Senator Nelson, we need more funding to research the cause and explore new treatments so myself and others like me will eventually not have to suffer in pain, depression in the worse way, silently. It’s my understanding that 56 million work hours are lost each year because of psoriasis and between 3 and 4 billion dollars a year are spent treating this condition, yet there is not even $1 per American with psoriasis given by the Federal Government to fund research.

Unfortunately I do not have the time or ability to totally express the pain I feel from this condition every day. I can not put into words the way it feels when my friends call to tell me about the pool party that I have to make an excuse to not attend. To save time I have thus far excluded the pain I feel everyday from a simple shower because soap on my psoriasis feels like acid on the skin. Let us not forget the embarrassment for leaving flakes everywhere I walk or sit.

I will conclude this letter now to prevent it from getting to long. I know that I have left off extraordinary amounts of data and facts that would make this more compelling, but I do not possess the know how to properly present it in a concise fashion. I can only appeal to you, as my Representative, to try and understand the pain, humiliation, and depression that I suffer. It can be improved with more funding!

Thank you for your time.

Best regards,
Hollis Roth

[rosy3939]

Thanks Chaim it was a good letter. We all hae to speak from the heart and how this disease we fight every day effects our lives.
Thanks

Mitch

[MelissaLynn]

I am considering taking excerpts of my online Mayo Clinic Diary and sending that.

Im so tired of hearing about this disease being cosmetic.
Its debilitating and its horrid.

Should I do that?
Best,
Melissa

[rosy3939]

Send them all. Nothing can be so compelling. I know it a little long but the are well written and show what we will go through to get relief. Send with a cover letter.

Your now one of my hero FDR, Gandi, Matty Felman, Elenor Roosevelt, Ros Parks, and I ham adding your name. That great company to emulate.

Thanks for sharing your spirit and determination.

Mitch

[bella247]

we've let this slip pretty far down the thread list, so let's bump it up and remember CApitol hill day is nearing!!!

Take care and smile

Bella

[Allie]

I have already sent mine.... In my letter I referenced the upcoming event & requested he pay special attention to what NPF is saying. I read over the agenda prior to writing my letter.... Let's hope it all works...

Mel - Maybe you can get the Mayo clinic to do a treatment summary for you. If they will get behind this (even a little bit) it could help termendously.

[rosy3939]

Reminder there is no time fram for sending in those letter but Capitol Day is May 17, 2004

Keep them coming!

Mitch

[rosy3939]

Reminder there is no time fram for sending in those letter but Capitol Day is May 17, 2004

Keep them coming!

Mitch

[GitOverIt]

to my local representative, Peter Visclosky....and to each of the democratic and republican senators....In my letter....i told them about our message boards and some of the sadder tales, about a brief description of psoriasis and also suggested in their leisure time to rent the movie "the Singing Detective" with Robert Downey jr. ( I suggested the movie to just let them know that this is not some country cousin disease that we can sweep under the rug).....

so now I'm happy to get that sent off:D

Sally

[bella247]

Allie too!! glad people have not forgotten to write!!

:D

Take care and smile

Bella

[rosy3939]

Too those of you who have responded to this thread, thank you

Too those of you you have written letter to ccongress, thank you

Too those of you who have sent copies to NPF, thank you



[SIZE=4]TO THE REST OF YOU WHY THE HELL NOT?

I have seen to much that has been going on one these board. The nit picking, the in fighting the name calling. The constant blather that appears. We have time for our favorivte uplifting songs. We post birthday wishes and miss you notes. We talk about kitty and dogs. Life derversions but....



[SIZE=4]TO TAKE TIME OUT AND WRITE A LETTER THAN BENIFIT YOURSELF AND THOUDSANDS OF NPF MEMBER WE DON'T HAVE TO TIME. THERE IS SOMETHING WRONG WITH THAT!

No one likes to have a good time more than me. But I know I have an obligation to myself and my fellow NPF members. And if you have the time to post to the boards you have the time to write a letter. The same letter can be sent to all three. Thirty seven cents times three equals $1.11 cents, a small price to pay for what the future may bring.

So I say one thing more and then I won't repeat it again.

[SIZE=4]GET OFF YOUR DUFFS AND DO WHAT YOU HAVE TO DO!
:confused: :confused: :confused: :confused: :confused:

[MelissaLynn]

I got the templet. Thank you, it was a GREAT help, I added my story, and view and emailed it to Senator Barbara Boxer and to Senator Diane Feinstein and to Congresswomen Juanita Millender- McDonald .
Who else do I need to send this to? Sorry, you know, brain is on meds.

With Love,
Melissa

[MelissaLynn]

What could I ask them to do? Who would I talk to? Ya gotta help me out on this one, Im overwhelmed with stuff as it is, but if you can give me a little guidance, Ill ask who ever at MAYO. Ill find them, just tell me who.

[rosy3939]

Good job Melissa. With all that you are going through right to write you letters and send them was not a easy task.

Everyone else, it not to late!

Mitch

[MikeK]

Originally posted by Melissalynn
What could I ask them to do? Who would I talk to? Ya gotta help me out on this one, Im overwhelmed with stuff as it is, but if you can give me a little guidance, Ill ask who ever at MAYO. Ill find them, just tell me who. Hi Melissa,

Look in any mirror. You'll see the best qualified person to tell congress about what it's like to live with severe psoriasis and what someone who undergoes Goeckerman has to endure. (Send them a copy of your diary if you wish. It speaks volumes.)

Mike

[MelissaLynn]

I would be willing to compose a letter including my Diary, but only excerpts, as I think they might loose interest and I am pretty wordy.
Maybe you all can tell me what you think would be the most valuable things to include? Its hard for me to choose.
Best,
Melissa