New Legislation for Autoimmune Disease

• By gonenatural
• Posted October 5, 2008 at 7:35 am

Hi Dave,

I want to thank you for the info. I will be writing a letter today and attached the info you gave.

I am tired of seeing money going here and there and I go from walking to stuck in bed and they do not know why and I can not receive the proper care from drs or at home.

I do have a rare blood disorder and they are finally teaching that in the schools, all of the medical I hope. I know this from an assistant who is still a student. She was well informed. Whenever I see a dr or go to the er or or they are so confused and do not understand what I am saying so I give up and I tell the dr to google it and learn cause it is important. I could die if they don't know.

Again, thanks
Gone Natural

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• By trevor
• Posted October 5, 2008 at 11:11 am

Although extra funding for research into these diseases would be welcome I fear that most of it would be waisted. This bill makes the assumption that the underlying cause of these diseases is autoimmunity. I don't believe that these diseases are caused by autoimmunity which would explain why all the autoimmune research up to now has been so fruitless. I believe that it is the innate immune system and not the addaptive immune system is the key to understanding these diseases.

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• By daverojo77
• Posted October 5, 2008 at 5:10 pm

Yeah Trever that's all fine and dandy but last I checked the diseases that got the most money thrown at them have had the most advances as well. So sorry bub no money wasted here.
Underlying cause or not these disease are classified as auto immune my the entire mainstream medical community. I believe that if a bill like this passes it will get us closer to the day that people wont have to wait years just to even get diagnosed.

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• By SP
• Posted October 6, 2008 at 12:44 am

Thank You for posting this. I have begun contact represenatives from my area of the world.
Hope it helps. It's way past due.

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• By BevB
• Posted October 6, 2008 at 11:37 am

Thank you so much for the information about H.R. 7078 ! I am thrilled! I emailed my Congressmen & asked for them to support it.

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• By daverojo77
• Posted October 6, 2008 at 5:35 pm

I hope some of these guys (reps) get back to use. I'm going to call the local office tomorrow see if I can get someone on the phone.

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• By julzcoop
• Posted October 8, 2008 at 8:53 pm

Hi Dave, thanks for the heads up!! I did a little research and found the site for this particular bill. I sent an e-mail to everyone in my address book that included the following information. Hopefully everyone here will do this too.

I am writing to urge each and every one of you to write a short letter to your congressmen and women urging them to support H.R. 7078. It will only take a few moments of your time, but could lead to cures for millions of people. I have provided a link to the H.R. 7078 bill where you can enter your zip code to be taken to a form to write to your congressmen and women, and it allows you to write the letter and send it through the site. I can’t stress how important this bill is to me and millions of other people who are suffering. Once you’ve written your letter, don’t stop there. Send this on to every one you know and ask the same of them.

http://www.congress.org/congressorg/issues/bills/?billnum=H.R.7078&congress =110&size=full

-Type your zip code into the take action now box and click Go
-On the next page select the last option: Compose your own letter, then click “next step” button
-On the next page fill in the forms and write your letter, then click the send message button at bottom

To view more information on this bill, please see the following link:

http://www.congress.org/congressorg/webreturn/?url=http://thomas.loc.gov/cg i-bin/bdquery/z?d110:h.r.7078:

Thanks everyone,
Julz

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• By daverojo77
• Posted October 8, 2008 at 9:06 pm

Julz thanks for your support I did the same thing but my email list is not that big. The second link doesn't work for me though. I wrote my my rep Congressman Steve Rothman of New Jersey. I included links for him.

I have yet to reach anyone at his office I can imagine they are busy since the election is 25 days away.

This is a long term effort, we have to keep emailing them after the election to see if we can get some responses.

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• By julzcoop
• Posted October 9, 2008 at 5:38 am

Hi Dave,

Try this link:
http://www.congress.org/congressorg/webreturn/?url=http://thomas.loc.gov/cg i-bin/query/z?c110:H.R.7078:

I wouldn't hold my breath waiting for a reply from my congress person. They are all very busy and their time would be better spent advocating for this bill. It's also VERY important that our letters aren't too long. They need to be precise and to the point, or we'll lose our readers. If you have to include your personal story, make it the shortest possible version. They don't have time to read hundreds and thousands of long drawn out letters.

I would concentrate more on getting the word out about this bill and urging everyone you know to write to their congress person. I am going to send out letters to everyone in my address book who's e-mails I don't have as well. I just have to get stamps. I'm not going to stop there either. I will also send letters to all my doctors requesting the same of them, and requesting that they show my letter to all their patients with autoimmune disorders or at least inform them of the bill. I will also hunt down local support groups for other autoimmune diseases as put them to work on this. We have a unique opportunity to reach the masses because the bill calls for assistance to ALL autoimmune diseases. If you don't know that many people, hit up some support group sites or your local support groups for other autoimmune diseases and ask them to do the same!! This is all about the numbers. If your congress person is bombarded with letters, they will know their constituents want this bill passed and will support it. It's all about the number of constituents (people in their districts) that want the bill supported.

Everyone on this site should be doing this! This is way bigger than writing to Oprah. This is what we had hoped Oprah could do for us!! Don't waste your time complaining about how lousy you feel, this is your chance to make a difference, don't waste it!!

Julz

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• By daverojo77
• Posted October 10, 2008 at 8:05 pm

HOLD YOUR BREATH! believe it or not regardless of the war and economy and the fact it's election year this can still happen. I got most of my family to write to their respective reps. Remember we need to write to our own reps and ask them for their support on this bill.

Julz you got the right idea.

BTW anyone interest in a Northern Jersey support group? We got 3 so far let me know and maybe we can get something going here.

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• By daverojo77
• Posted October 13, 2008 at 9:24 pm

People who have sent letters,

My wife
My brother
his wife
My other sister in law
My good buddy Dee from Miami
His wife
Me

Still working on getting some more friends

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• By daverojo77
• Posted October 13, 2008 at 9:29 pm

This is one of the letters I sent

Dear congressman
I am writing this letter to express my interest in Bill H.R. 7078 introduced by congressman Patrick Kennedy from Rhode Island.
An Autoimmune disease is essentially when your immune system is flawed and attacks itself. My brother has ulcerative colitis. My mother in law had crohn's disease as did my brother-in-law, all of these auto immune disease. I suffer from Sarcoidosis an auto immune disease that doctors know very little of due to lack of funding which is why this bill is so important to me. Please support bill H.R. 7078 so that funding will allow further research and development of better treatments and perhaps one day a cure.

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