SOMEONE PLEASE TAKE ME BY THE HAND...

[cereal]

and give me a little guidance. I have been reading and re-reading the info about CHD. Due to many problems I will not be able to attend. (money/lack of...sick hubby, no babysitter.. I don't fly and if there weren't other problems our car would never make it to Washington....etc)... I have been thinking and looking for information for days. Would someone here write a letter and post it so I get a feeling what the letter should say? I know the letter shouldn't be no longer than a page, and the most important information should be in the first paragraph. I also found the links where we can look up to see who our goverment people are...now don't yell at me, I don't do politics well. I've been out of high school since '75 and I don't remember what they tried to teach me in goverment class. Who are we writing to? Cossgressnen/Senators???? Is there people here at our local level we should also write to? How do I go about finding out the people on a local level?

How soon should the letters be mailed and or hand delivered? Closer to CHD or does the timing matter? I was thinking that I could have each of my extended family members also write letters, these people have wittnessed daily how bad my skin is, the pain and now the loss of movement from the PA.

Is There a blank form letter floating around anywhere??? I was thinking I could hit some of the derm's offices to see if there are any p patients and ask them to fill in the letter. I also have an idea about approaching one of the local news stations to put the call out for all p people and their families in the area to come together for an awareness walk or letter writing campaign. I still think I'm the only one in sw ohio who has P......

In between chasing the grandkid around I can make time to write as many letters that need to be written. I also have the time to organize a group if I ever find anyone else with P in this area. I have lots of ideas, I just need someone smarter than me to get me going in the right direction. And yes as I look back on my teen years I now know I should have paid more attention in school. I'm even thinking about pming every person who is signed up here as a member to ask them to write letters.....Oh and another question after we write the letters are we supposed to forward a copy of the letter to the NPF??? Have I forgotten anything else? OK thanks in advance.....

[littleangel]

hey! wish you could attend CHD but definitely understand that sometimes things are just impossible! but it's so awesome that you're going to write letters. SPAM THEM! if it means getting our point across it is more than worth it.

anyway, i am currently pming you a copy of the letter i wrote and if anyone else wants me to do that just pm me!


as for the other questions: we're writing to 2 senators [on the state level] and a representative. you can find the representative for your area on www.house.gov and the senators at www.senate.gov


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

that link shows how you can contact congress and also gives you some helpful hints in letter writing!


hope this helped

[RichJ]

hi pat, i could not right a letter if my life depended on it. but here's one that bella put on a thread for me.

have a good day all

richard

--------------------------------------------------------------------------------

Here is one that the NPF gives....I will post mine ASAP.....until then!

Sample Letter: NIH 10% Funding Increase
[Date]
The Honorable [First Name] [Last Name]
US Senate/US House of Representative
Washington, DC 20510(Senate)/20515(House)

Dear Senator/Representative [Last Name],

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

I [my husband/wife/child/parent] suffer from Psoriasis/Psoriatic Arthritis, a chronic, immune-mediated disease for which there is no cure. Psoriasis--and the psoriatic arthritis that accompanies it in upwards of 30% of cases--can cause unimaginable pain, limit mobility and motor function, and severely reduce a person's quality of life. [Personal detail about how psoriasis has affected you will make your letter more compelling. Include it here.]

Psoriasis poses a severe hardship to millions of Americans in terms of economic, physical, and psychological costs. About 56 million hours of work are lost each year by people who suffer from psoriasis, and between $2 billion and $3 billion is spent each year to treat the disease. In addition, a 1999 study found that moderate to severe psoriasis can cause reductions in physical and mental functioning comparable to that seen in diabetes, heart disease, hypertension, and depression.

The best hope for the more than 5 million Americans living with psoriasis and/or psoriatic arthritis is increased federal research funding. I look forward to your reply.

Sincerely,

[Your Name]
[Your Address]
__________________

[RichJ]

hi again pat,
here is a link to another way to get a letter. just fould joe's post. i printed that letter to.

thank you to ali

have a good day all

richard

http://www.psoriasis.org/forum/showthread.php?t=12035

[cereal]

Thanks Rich, I had read those posts but had totally forgotten where I saw them. Sometimes my brain is just too tired to think!!

Littleangel thanks for the pm, it is a huge help!!!

Will post my letter draft when I get it done hopefully this morning!!

[RichJ]

your welcome pat. can you belive i remember were they were. that's a first. haft the time i can't find a post that im looking for.

have a good day all

richard

Hi guys,

I know there is a link on the Capitol Hill Day section of the NPF site that usually has a form letter there, but I think it was taken down for revisions or something, before the big letter writing campaign. Wish I would've printed it out before anyway! According to that page, it will be up soon, closer to the March/April time for the campaign. I will post my letter later on today when I have more time!


mari

[rosy3939]

Merkinsmom,
What you are doing is so important. We know everyone can't make CHD for a lot of reason and it no shame. BUt everyone can write a letter. That is just as important and I commend you for doing so. Not knowing the process is ok and no one will yell at you for wanting to do your part. From one sufferer to another thank you,

Mitch

PS be sure to ask your elected officals to repond to your letter.

PPS Good responce to the post Rich and Allie.

Bella's letter is very good but I need to point out one slight mistake, (this may be last years letter). The budget we are trying to influence is the Fiscal Year 2006, (FY2006), This is the budget that was transmitted to congress from President Bush on Feburary 2, 2005.

It covers the fiscal year beginning October 1, 2005 and runs through September 30, 2006.

Keep wring those letters.

[kkellogg]

Way to Fight the P!