I AM LEAVING!!!!

[bella247]

APRIL 9 TO GO TO CAPITOL HILL DAY!!!!! I hope to hear more committ to this important chance soon!! We need all the help we can get on the hill....

Hope people are writing their letters....if nothing else all this current frustrated stage everyone is in should make for some GREAT letters to their respective Reps!!!!!!!


Take care and smile

Bella :D :D :D

PS--give PJ's thread a look on the Psoriasis Board, tons of info there! : )

[FlakeyMatt]

Bella,

You got me I thought for sure you meant that you we're leaving the NPF when I saw the subject.

See you on the Hill.....

To everyone else


as Bella said try to make it there if you can and if you can't take the time to draft a letter to your Congressional Reps. It might mean your post total will be not increase as fast for that day but it will be worth it. ;)

F.M.

[misales]

excellent marketing strategy bella. you sold a lot of people on that one!

[MikeK]

Like Matt, I thought that you were leaving the NPF!!! :eek:

I'm already registered. I'll see you on the Hill!

Mike

[JodyGK]

On April 8th for CHD...can't wait to see you again, Bells, and everyone else!

Jody

[Kimbercat]

BELLA!!!! :eek: :eek:

You ever do that to me again, I will personally wring your gorgeous neck!! ;) See you there! :cool: :D

xoxoxo

[bella247]

ITwas a ditch effort to get people to FOCUS on the REAL ISSSUES that plague us, with is getting this disease cured. I just want people to realize how IMPORTANT CAP HILL DAY IS/CAN BE.

[RichJ]

hi bella
you scraed me when your thread started that you were leaving. im going to take to robin tonight. this will be fun. well maybe

have a good day all

richard

[bella247]

Hope all goes well Rich!! Didn't mean to scare ya!!!! :D

and if we could see ya at CHD that would be awsome!!!

take care

Bella

[Patchsigns]

Thanks Bella for helping us to re-focus on a terribly important issue!!!

Gosh...if YOU ever left the NPF, now THAT would be a terribly important issue, too!!!

Rally the troops, Bella!!!

Blessings,
Joe

[bella247]

WHEW....I HOPE WITH ALL THESE SUPER LONG DEVOTED LETTERS PEOPLE ARE WRITING HERE ON THE MESSAGE BOARDS ABOUT THINGS THAT BUG THEM,

SOMEWHERE ALONG THE LINE THEY HAVE FOUND THE TIME TO WRITE LETTERS TO THEIR REPS, ABOUT THAT SILLY THING WE HAVE CALLED PSORIASIS....YOU KNOW THE DISEASE THAT REALLY BUGS YOU TOO, THE REASON YOU ARE HERE...........


WE CAN ONLY HOPE!!!

XO BELLA

[RichJ]

hi bella,
well i willn't be in chd. that's life i guess. i have been tring to right a letter that i can under stand. im no good at that.

Bella it's too close to my move and I wish I could be there. I will write my little fingers off!!!!!

XOXO

Annie

[Patchsigns]

Bella....

Could you post a sample letter that would be effective??? Short of writing it for us.... Would an attachment to a pettition of some sort help...??? We are looking to you as our leader.

Blessings, my friend...

Joe

[Patchsigns]

Too Important to stay hidden.....

BUMP!


Joe

[bella247]

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]

thank you so much bella. theres no way i could wright some thing like that. thank you.

have a wonderful night all

richard

[Patchsigns]

Bella!!! You are a Blessing!!!!! A million thank you's!!!! Okay....guys..... Let's write a million letters!!!!!! This is so-o-o-o important!!!!!

Write...Write...Write....!!!!


Joe

[MariaPaula]

I am leaving too !! I am working with my letter and I'll post it in here when it is done. I am not bad creating letters, so I know that I'll do a good job. I know how check my grammar and spelling mistakes, before I send something to a higher authority, and I will do my best to find the correct professional words. I studied Journalism in a Spanish College and I was a journalist for more than six years in my country so I know that I'll do something valuable. I am detail oriented and I know what is our goal.

See you everybody in there !!! I was thinking to leave on Friday night and stay there until Tuesday morning, if I get my two days off from work. Let see... I am still planning my trip. I already found who is my representative (or my husband's one because I can't vote, but he does for me... lol)

[bella247]

dear Maria that is great!!!!

I CANNOT WAIT TO MEET YOU!!!!! I AM SOOO HAPPY YOU ARE GOING TO BE IN DC!!!

TAKE CARE AND TALK SOON!

BELLA

[RichJ]

hi bella,
thank you for the letter. i had my boss help me save it to offices. so now i can change the spots and put there names in and print it. i will send as many as i can. thank you so much. there was no way i could have done that with out your help.

have a wonderful night all

richard

thank you again

[bella247]

You are most welcome Richard!!! Though I can't take credit for that letter, that was a sample letter provided by the NPF. I just bought it here so people could get an idea of what to write.

I am soooo glad you wrote and hope others will follow in your steps!!! :D Way to go Rich!

take care and smile

Bella

[Patchsigns]

I'm doing the Hustle.... and.... I'm doing the BUMP!!!!

[bella247]

I just officially registered for CHD, I hope more people will do the same!!!

we need all the voices we can get out there!!!

Please everyone consider this amazing oppertunity!!

[MelissaLynn]

Hi Everyone-
I will be there, though I am not yet registered- I soon will be.
Im still interested in "helping out" but I need to know whats going on with that. Please PM me.
For a list of Citys we fly- go to www.jetblue.com.
If you know of someone that wants to participate in CHD and is in or near one of our Citys, please contact me. The sooner I write my proposal to Jet Blue, the better. The number of flights I will be requesting is going to be based on the requests I receive. The quidlines are simple. The person must have P or PA. and they must be a verifiable member of NPF and they must submit a request to me before March 8th.

So, there ya have it. You can count me in, but more importantly, please PM me if you or someone you know of is interested in going and is in or near a city that Jet Blue serves. I will then write a formal letter of request on behalf of the Members I would like Jet Blue to help get to Capital Hill Day.
There are no guarantees, but I have excellent reason to believe this is something they will honor.
I believe its very important to have a strong voice this year, as medication cost rise, as debilitating diseases like ours continue to grow in numbers and so too does the number of people it affects.

Best to you all,
MelissaLynn