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Last week, a Congressional Resolution for IBS awareness and research was introduced in the US House of Representatives. It currently has 3 sponsors from both major parties and needs a majority vote to pass. If it does, it has the potential for major impact on national awareness that hopefully will pave the way for proposed IBS legislation in the future.As an individual IBSer and member of this BB posting this here on my own initiative, I encourage all IBSers who are U.S citizens to contact your Representative and to ask your supportive family, friends, colleagues, classmates, acquaintances, Facebook friends, etc. to forward the information on and/or also write their own Representatives. If you are an IBSer, telling your personal experiences helps, but if you are reluctant to get too detailed or identify yourself specifically as an IBSer, just ask your Representative to support HRes 1309 on behalf of those with IBS. Personally, I was surprised when a couple of acquaintances of mine, who, as far as I know, have *no* connection to IBS other than knowing me a bit, immediately emailed their own Representatives and told me so. One does *not* have to be an IBSer to support this resolution, but there is no shame in being an IBSer either, so please do not be shy. Advocacy is how things get changed in this country, and we all know that many of us with IBS need a lot of change for the better. To me, as an IBSer whose needs are not adequately met by existing resources, this is not an issue with which to debate philosophical or political differences within or outside of the IBS community. This is a huge and real opportunity for many IBSers and our non-IBSer supporters to make ourselves heard across the country.To find your Representative's contact information go to http://www.congress.orgFor more information, go to Dr. Bolen's IBS blog at http://ibs.about.com orIFFGD's Facebook page at http://www.facebook.com/iffgd You should be able to view it (though not comment) even if you do not have a Facebook account.
 

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thanks so much for posting this info! definitely this is a much needed resolution. i'll be writing my representative immediately.
 

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Discussion Starter · #4 ·
I meant to include this in the post the other day. It's the Library of Congress record on the resolution, where one can see who the sponsors are, where it is in committee, date of last action, etc. It's not much to look at yet, but hopefully as there is more action and more support, it will be interesting to some of you.http://thomas.loc.gov/cgi-bin/bdquery/z?d111:h.res.01309:Once again, U.S. citizens, if you have not already, please contact your Representative and encourage anyone you know and has been supportive of you in your IBS struggles to contact theirs, even if they themselves do not have IBS. This is the time that people of power and influence, our elected leaders, can do something for the IBS community, but only if more of us speak out as to the need we all know is there.
 

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Discussion Starter · #5 ·
It's Memorial Day in the US. While today many Americans are remembering those who gave their lives serving the country, remember that many veterans with Gulf War Syndrome have IBS too.According to the link I posted before for the Library of Congress, H. Res 1309 now has 6 sponsors from Wisconsin, Vermont, Arizona and the District of Columbia. I'm bumping this thread up from page 4 of the forum, hoping I can encourage more of you to contact your own Representatives. You can do so at http://www.congress.orgThere are 20 or so hits for IBS there now. Some of them are to Senators or President Obama though. That's very nice, in general, but they don't have control over a resolution in the House of Representatives. Please make sure to address your actual Representative in your district! Our elected leaders can "do something" for us now. Fellow IBSers and people who support us, please speak out. Don't let this opportunity pass us by.
 

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Discussion Starter · #7 ·
Once again bumping this up from page 4 to say that since the last time I posted, 2 more representatives (from Florida and Iowa) have signed on. You can see them here.http://thomas.loc.gov/cgi-bin/bdquery/z?d111:h.res.01309:and find contact information for them or your own representatives here. Make sure you address the House member for your district, not your senator or the President. The House member is the one in control of his or her vote on House matters. The hits for "IBS" are all at least a couple of weeks old at the moment.http://www.congress.orgIt's welcome progress, but there is still a long way to go to get the support of the majority of the House. This is a bipartisan resolution currently supported by both Democrats and Republicans, so please don't let any political differences or philosophical differences within the IBS community deter you from asking for your elected leader's support. This is a major, concrete awareness opportunity.
 

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Discussion Starter · #8 ·
Again, bumping this up from page 4, because as far as I can tell, there hasn't been much action in the last month. With only 8 Representatives signed on right now, the resolution has a long way to go to reach a simple majority of the House. (219 of 435 Representatives.) If you have not already, please take a few minutes to write or call your legislator and to alert any family members, friends, colleagues, classmates etc. who have been supportive of you in your IBS struggles. Some of them do help, and personally, I've found that a few are the people I least expected would do so. Please do not be shy. Opportunities like this to get major national awareness do not come around very often.
 

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Do they listen to people outside the USA??? I would be more than willing to rattle off a few e-mails pleading the case of us IBSers....maybe a bit of old ego boosting or something by saying how this is a worldwide problem and they could really help so many people etc etc...the sooner this hideous disease gets the proper recognition, the sooner they can start working on finding ways to help.
 

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Discussion Starter · #10 ·
Do they listen to people outside the USA??? I would be more than willing to rattle off a few e-mails pleading the case of us IBSers....maybe a bit of old ego boosting or something by saying how this is a worldwide problem and they could really help so many people etc etc...the sooner this hideous disease gets the proper recognition, the sooner they can start working on finding ways to help.
Unfortunately, Fedup36, I doubt they would listen to non-voters outside their own geographic districts. However, if you're serious about writing emails on behalf of IBSers, I encourage you to look for opportunities to do that in the UK-- to Parliament, Downing Street, the media, NHS, anywhere you think you may be able to influence awareness or decisions in a positive way for IBS. I don't know about in the UK, but at least in the U.S., big change on anything doesn't come along by itself. It comes from citizens organizing and saying X issue is important, and we are going to persist until the people in power pay attention. I respect the Lotronex and Zelnorm actions years ago, before my time as an IBSer, but in the time since I got IBS, other than the brief uproar over McCain on this BB, I haven't seen much serious interest at all in advocacy issues. In my opinion, that's unfortunate, because IBSers really are a huge group that could make a major impact at accelerating awareness, research, the availability of community resource, etc.if more than a small fraction of us did things like this.Yes, "bathroom issues" are embarrassing, but at least in the U.S., IBD and colon cancer are very visible causes. People are always telling me they see advertisements for the Crohns and Colitis Foundation, I see local fundraisers for them regularly. When I was first diagnosed with IBS and looked all over for a local, in person support group (In a previous profession, I used to do this sort of thing for other people, so I know where to ask.), I never found one for IBS, but quickly found one for IBD. Just this week, in a very visible major corporate contest in which the public voted for charities to receive donations from the corporation, a grassroots gastroparesis organiation was among the winners-- not the top prize, but still, they were able to organize more than 1200 votes. Gastroparesis is a functional GI/motility disorder like IBS.Yes, there's a stigma among certain people, IBSers are making it up, we're hysterical and neurotic, it's all in our heads. But that sort of thing happens to people with other functional pain syndromes too-- fibromyalgia and CFIDS/ME. There are several organizations concerned with each disorder in the U.S. and some are run by affected people. One of the prescription meds widely used for FM is advertised on television almost every evening during the evening news on a major channel-- and in the process, it explains the basics of FM. There is a stigma for mental illness, but I personally know many mental health advocates. There was a huge stigma for HIV, and many people who were infected hid in the closet like many IBSers, but eventually some of them came out and were able to get global public support. What are IBSers waiting for? What's stopping us from being better organized as a community to make noise for things like this? I'd really like to know. I've been asking this question of various people and on various forums ever since I got IBS myself, and I still don't know a credible answer.
 

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Discussion Starter · #11 ·
Two more representatives signed on last week (another one from Florida and one from North Carolina. I presume UNC is in the latter's district.)
 

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Two more representatives signed on last week (another one from Florida and one from North Carolina. I presume UNC is in the latter's district.)
I am in the UK so there is not much I can do form here for the US. But I wanted to write to say "come on all you people on this board who are in the US and write that letter or email askig for the support for this bill". This is SOOOOOOOOOOOOOO important. If the US Gov't get behind this then finally IBS will get the research that it deserves. So please, let's get going now!Post here to say that you have written and we can get some sort of roll of honour going.Come on, please, do it now!(Jeff or another moderator, can you change the title of this post perhaps asking for "support needed now, this affects everyone on this board" or something similar" please so that more people will be spurred into action?).
 

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I have e-mailed my Member of Parliment here in the UK and my next step is the local health authority and the local media. Sadly I have been unable to find any support groups in the area and very few in general, which is really frustrating as practically evrey other illness/disease has support groups! I have my next check up with he docs in a couple of weeks and plan to ask her then about how I go about setting up a group with medical support. Having read some of the stories on here, I realise how fortunate I am that my IBS doesn't control my life as much as some. I have also noticed how very lonely and isolated it makes people feel and would like to find a way to help.
 

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I have e-mailed my Member of Parliment here in the UK and my next step is the local health authority and the local media. Sadly I have been unable to find any support groups in the area and very few in general, which is really frustrating as practically evrey other illness/disease has support groups! I have my next check up with he docs in a couple of weeks and plan to ask her then about how I go about setting up a group with medical support. Having read some of the stories on here, I realise how fortunate I am that my IBS doesn't control my life as much as some. I have also noticed how very lonely and isolated it makes people feel and would like to find a way to help.
Good for you. I will join your group. Let me know when it is set up.
 

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Discussion Starter · #15 ·
Glad you're both interested in doing concrete things for the cause in the UK, fedup36 and idkwia. I'm sure it's needed over there too.To US members, an influential representative from the New York delegation is the latest co-sponsor to House Resolution 1309. The current total number of sponsors and co-sponsors is 11-- 3 from Wisconsin, 2 from Florida, 1 from Vermont, 1 from Washington, DC, 1 from Arizona, 1 from Iowa, 1 from North Carolina and 1 from New York.Persistence does work. Please write or call your Member of Congress on this issue and keep doing so until results happen.
 

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Discussion Starter · #16 ·
I've noticed an announcement on a non-IBS site that Congress will be on recess from this coming Monday, August 9 until Labor Day. This means legislators will be back in their local districts. This would be a good opportunity to write or call or even visit your local office, if you are able, to press for support of H. Res. 1309.Once again, you can find your representative here. http://www.congress.orgThe official Library of Congress record of this resolution, including current supporters is here.http://thomas.loc.gov/cgi-bin/bdquery/D?d111:8:./temp/~bdUrII::|/bss/I am a concerned IBSer and member of this board since 2008 posting on my own initiative. I do not represent any legislator or GI organization. I am one of you. This resolution is in all of our long term interest. Please ask your representatives to support it.
 

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I just emailed both of my Reps. Hopefully alot of people will get active and we can get something done! Thanks for the info.
 

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Discussion Starter · #18 ·
Bumping this up from page 5, since Congress goes back into session on Monday, September 13. If you have not yet contacted your representative, this would be a good time to do so. If you contacted your representative a while ago and he or she has not signed on yet, consider writing or calling again. I was able to secure my representative's support, but it took several attempts. Major opportunities like this don't come along very often, and this resolution will not get passed by itself. Please speak out and ask anyone in your life who has been supportive of you in your IBS struggles to consider speaking out as well.Find your representative's contact information here: http://www.congress.orgPlease make sure you address your House Representative, not your Senators or the President. The representative is the one with power to sponsor in the House, not the others.The list of current sponsor and cosponsors from the Library of Congress is here: http://thomas.loc.gov/cgi-bin/bdquery/z?d111:h.res.01309:If you choose to contact your representative or tell others about H. Res 1309, please post here to encourage other readers and keep this thread bumped up in a visible position. Thanks.
 
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