# H.R. 2239, Functional GI & Motility Disorders Research Enhancement Act is in the U.S House of Representatives.



## journ3 (Feb 16, 2009)

U.S. citizens, on June 16th,the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2011 was introduced in the House of Representatives with support from both parties. This is major legislation on behalf of people with IBS and other functional GI or motility disorders, but it will take time, effort and advocacy from affected people and our supporters to show Congress that this is important enough to pass and enact.Please write or call your federal Representative (not your Senators, the President, your Governor or other local officials. They have no control over anything that happens in the House of Representatives!) and ask for his/her co-sponsorship of this bill. State who you are and where you live in his/her district. This is very important so the Representative's staff knows you are a real person and you are actually an eligible voter in that district. They will not pay attention to people who do not live there. If you feel comfortable, tell briefly why you are interested in this bill, again so they know who you are and why the bill is important-- such as have had IBS for X years, have had difficulty finding adequate relief or have a family member with IBS, etc. Then say thank you. That's it.For more information on the bill itself, go to the IFFGD site herehttp://www.iffgd.org/site/advocacy/legislative-alerts/action#hr2239To find your Representative's contact information, go here and enter your zipcode.http://www.congress.orgIFFGD can guide its members who have any difficulties with this. IBS Impact will also be following up on a grassroots level and I hope members here at IBSGroup.org will also call or write and keep this thread active. This is a major opportunity for the IBS community and its various sites and organizations to come together, regardless of political, philosophical or personality differences, make our needs known, and do something to make our lives better in the future. Self advocacy takes time, effort and patience, but it is possible if more people are willing to make noise publicly like other health and disability groups. Please contact your Representative.


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## annie7 (Aug 16, 2002)

thanks so much for this update, Journ. i wrote before when you gave us the first heads-up about this bill and i'll write again today. they will definitely hear my story! as you said, this legislation is so very important and desperately needed. thanks so much for keeping us informed.  and thanks for the links!


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## journ3 (Feb 16, 2009)

Thank you, Annie. To clarify, this is not the same thing I was talking about last year. It's better. Last year, it was a Resolution for IBS awareness that basically said the sponsoring Representatives officially recognize that IBS is a problem. 11 (of 435) did eventually sign on. But since there are House elections every 2 years, after each election cycle, the composition of the House is different and anything introduced is no longer valid unless it's introduced again. Also, one of the co-sponsors lost re-election. Last year was important for raising awareness, but that was the extent of it-- awareness. This current Act is better because it broadens the bill to all functional GI and motility disorders (IBSers make up the majority of those, but this means people with only other FGIMDs will be interested and will be helped too.) and because it actually directs the National Institutes of Health to do certain things regarding research, education, the FDA, etc. Nobody's taxes are going to go up because of it. I'm told the money is already there and has been for a while. It's a matter of making enough noise so NIH sees this bill as a priority in its budget. It will take a while. Right now there are 2 sponsors. We need 218 (a simple majority) to pass the House. Only after the House passes it can the Senate then take up a similar bill. If the Senate passes that, then the President can sign it and it will be enacted, but we are a long way away from that yet. It will probably take more than one Congressional cycle and several years, but if a lot of us work at it, it can happen and maybe we can speed up the process.For all of you who complain that nobody understands and nobody wants to do anything for us, now is your chance. *Some* people want to help us. Congress has the power to make it happen. Each of us has the power to make it happen by coming out of the closet, getting over the embarrassment, etc and asking publicly and persistently for this very specific help. It only takes a few minutes to write an email or pick up the phone. Please do it. Then post here to encourage others.


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## SarahLund (Aug 16, 2010)

Please help advertise about this illness in the media. It needs to be known about. No matter who has it. If the public are aware of the symptoms and types of i.b.s then they will at least know what the symptoms are e.g:-recognising whether their symptoms are a type of i.b.s.


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## annie7 (Aug 16, 2002)

thanks, Journ, for the additional information. i checked out both your links and then sent my e-mail just now through congress.org. that webite is so helpful.thanks again for all your information, for continuing to keep us posted and for all your years of dedication and hard work as an advocate.


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## idkwia (Feb 26, 2009)

Well done Journ, many thanks for all your efforts.


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## journ3 (Feb 16, 2009)

Bumping this up from page 4. I realize the letters published on the Congress.org site may not be completely representative of the ones received, and I, myself, wrote directly through my own Representative's site, not Congress.org. However, the last time I looked, almost every letter about HR 2239 on Congress.org says, "I have gastroparesis" or some other FGID, not "I have IBS." What is it about people with other FGIDs that makes them willing to write when it looks as if IBSers don't?


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## annie7 (Aug 16, 2002)

i wrote my rep on july 1 and i wrote from the congress org site but i didn't choose to put my letter on the site....


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## journ3 (Feb 16, 2009)

annie7 said:


> i wrote my rep on july 1 and i wrote from the congress org site but i didn't choose to put my letter on the site....


Thanks, Annie, I know you wrote, because you took the time to post about it when you did. If others wrote or called through any means, please post in this thread to encourage others and to keep the thread bumped up where readers can see it. If you happen to get a response of some kind from your Representative's office, please post about it too.


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## journ3 (Feb 16, 2009)

Another Representative signed on recently. Yesterday's post to IBS Impact's blog is here for anyone who is interested.http://ibsimpact.wordpress.com/2011/08/01/representative-welch-of-vermont-co-sponsors-hr-2239-for-functional-gastrointestinal-and-motility-disorders/


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## journ3 (Feb 16, 2009)

Congress is back in session after the summer recess. This is a good time to write or call to ask for your Representative's support, if you have not done so already. HR 2239 is currently sponsored by Representative Sensenbrenner (R-WI-5), and cosponsored by Representatives Moran (D-VA-8) and Welch (D-VT.) If you are a voter in those districts, please write or call and say thank you. If you have written or called some time ago and not gotten a response, call or write again. If you need help on what to do, post and say so. Don't take this legislation for granted. People with the power to help us as IBSers are trying to help. We need to help ourselves, come out of the closet en masse and tell our Representatives that this legislation is needed. If we don't, nothing will happen. It's up to us.


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## annie7 (Aug 16, 2002)

thanks for the heads-up, journ. i wrote my rep. june 30 and never heard back from his office (although i have heard back from him on other issues) so i have just now written him again, as you suggested, through congress.org. and i'll keep writing til i get a response.you are so right--this legislation is critically needed.


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## idkwia (Feb 26, 2009)

Well done Journ3, is there anything I can do from the UK?


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## journ3 (Feb 16, 2009)

idkwia said:


> Well done Journ3, is there anything I can do from the UK?


Thank you for asking, idkwia. If you are a US citizen or dual citizen who happens to live in the UK but also has an address in the US, you can write to the Representative for the Congressional district that corresponds to that address. If you are only a UK or other non-US citizen, unfortunately I don't think they would pay attention to any direct advocacy by you, as you are not a voter in their district. However, if you know US citizens with IBS or other functional GI or motility disorders, you could certainly alert them to the issue. If you have US citizen friends, family, coworkers, classmates, etc who do not have a functional GI disorder but have been particularly supportive of you in regard to IBS issues, you might do the same and ask if they would write to their Representatives in support of this legislation.While this legislation is specific to research funding and coordination systems in the US, in the long run, if enacted, any scientific progress will eventually benefit those in other countries, as those of us in the US benefit from the work of scientists in other countries. If there are advocacy issues specific to the UK that may be of interest, also feel free to let me know by private messaging so I can disseminate those through my advocacy focused group and website.


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## annie7 (Aug 16, 2002)

just checking back in as requested. got a letter in the snail mail today from my rep in response to my e-mail on sept. 12. re HR 2239. it was similar the ones i've recieved before on previous issues--the standard form letter: thank you, keeping my views in mind, etc etc. but hopefully it'll help him see how important this legislation is--and even more so if a lot us write..


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## journ3 (Feb 16, 2009)

annie7 said:


> just checking back in as requested. got a letter in the snail mail today from my rep in response to my e-mail on sept. 12. re HR 2239. it was similar the ones i've recieved before on previous issues--the standard form letter: thank you, keeping my views in mind, etc etc. but hopefully it'll help him see how important this legislation is--and even more so if a lot us write..


Thanks for posting, Annie. Even if it is a form letter, it's more encouraging than no response. It depends on the individual legislator, but often, unless it is a popular issue, there will not be any response to the first attempt, However, they do generally log letters and calls, so it might be the second, third or later attempt at contact from the same constituent that triggers the form letter. Calling 2-3 times can also be effective, because that means a staffer needs to actually talk to you and take a message. If you are polite but persistent, eventually they will do something to get you to stop calling.


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## journ3 (Feb 16, 2009)

According to the Library of Congress database, another Representative signed on last week. That makes 4 Representatives (2 Republicans and 2 Democrats) from Wisconsin, Virginia, Vermont and California supporting HR 2239. It is my understanding that this bill is revenue neutral, meaning the money is there in the National Institutes of Health (NIH). It's just a matter of budget priorities, not new taxes.If you are a U.S. citizen and you have not written or called your Representative already, please do so. If you have contacted him/her at least 2-3 months ago and never gotten a response, try again. 4 Representatives is progress, but there is a long way to simple majority of the House. This has the potential to really help all of us with IBS and other FGIMDs in the long run. Please take a few minutes of your time to do this and to pass the word to others.Some helpful links are in my original post quoted below. The IBS Impact blog also has a post with further information and links which I just put up today.http://ibsimpact.wordpress.com/2011/10/14/representative-gallegly-of-california-co-sponsors-hr-2239-for-functional-gastrointestinal-and-motility-disorders/


journ3 said:


> U.S. citizens, on June 16th,the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2011 was introduced in the House of Representatives with support from both parties. This is major legislation on behalf of people with IBS and other functional GI or motility disorders, but it will take time, effort and advocacy from affected people and our supporters to show Congress that this is important enough to pass and enact.Please write or call your federal Representative (not your Senators, the President, your Governor or other local officials. They have no control over anything that happens in the House of Representatives!) and ask for his/her co-sponsorship of this bill. State who you are and where you live in his/her district. This is very important so the Representative's staff knows you are a real person and you are actually an eligible voter in that district. They will not pay attention to people who do not live there. If you feel comfortable, tell briefly why you are interested in this bill, again so they know who you are and why the bill is important-- such as have had IBS for X years, have had difficulty finding adequate relief or have a family member with IBS, etc. Then say thank you. That's it.For more information on the bill itself, go to the IFFGD site herehttp://www.iffgd.org/site/advocacy/legislative-alerts/action#hr2239To find your Representative's contact information, go here and enter your zipcode.http://www.congress.orgIFFGD can guide its members who have any difficulties with this. IBS Impact will also be following up on a grassroots level and I hope members here at IBSGroup.org will also call or write and keep this thread active. This is a major opportunity for the IBS community and its various sites and organizations to come together, regardless of political, philosophical or personality differences, make our needs known, and do something to make our lives better in the future. Self advocacy takes time, effort and patience, but it is possible if more people are willing to make noise publicly like other health and disability groups. Please contact your Representative.


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## journ3 (Feb 16, 2009)

I had just put a post up on the IBS Impact blog about the 4th Representative late last week when the 5th, Jesse Jackson, Jr. of Illinois, signed on. There is now a new post up on the IBS Impact bloghttp://ibsimpact.wordpress.com/2011/10/17/representative-jackson-of-illinois-co-sponsors-hr-2239-for-functional-gastrointestinal-and-motility-disorders/I also just got off the phone with my own Representative's aide on health issues in the Washington, DC office. I had written in June and had not gotten a reply, so switched strategies. The call took me literally 2 minutes and 14 seconds according to my phone timer, and that included waiting for the correct aide. Not much time at all.


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## journ3 (Feb 16, 2009)

Representative Tammy Baldwin of Wisconsin signed on as a cosponsor last week. This makes 6 Representatives supporting this bill-- the original sponsor and 5 cosponsors, both Republicans and Democrats from Wisconsin (2), Virginia, Vermont, California and Illinois. This Act needs 219 Representatives to support it by the end of the current Congress in 2012 to pass, otherwise it has to be introduced again as a new bill and start over.No new taxes or spending are involved. The National Institutes of Health has an existing discretionary budget and through this legislation, Congress can direct NIH to spend some of that money on functional GI disorders, of which IBS is the most common. There are provisions in this legislation that will affect research, the education of medical professionals on FGID, the availability of medical care at specialized FGID centers similar to the one currently at the University of North Carolina, coordination with the FDA regarding approval of new meds, etc. These are important changes for the future of IBSers as a whole. No, it's not going to cure your or my own IBS this minute, unfortunately, but in the long run, all this can do a lot to help present and future IBSers get better help and a better quality of life. Isn't that what so many of us on this BB and others keep complaining about? U.S. citizens, please put aside your embarrassment, apathy, political, philosophical or personal differences you may have within the IBS community and come out of the closet. If your Representative currently supports HR 2239, please say thank you. If your Representative doesn't yet support it, ask and keep asking.More details are in this IBS Impact blog post from today.http://ibsimpact.wordpress.com/2011/11/11/representative-baldwin-of-wisconsin-co-sponsors-hr-2239-for-functional-gastrointestinal-and-motility-disorders/


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## journ3 (Feb 16, 2009)

Representative Maurice Hinchey (D-NY-22) signed on as a cosponsor last week. He represents all or part of 8 counties in the Mid-Hudson, Catskills, Southern Tier and Finger Lakes regions of upstate New York. If you are a constituent (and you may need to check Congress.org for this as there was a redistricting and renumbering a few years ago), please say thank you.This makes 7 Congressional supporters (1 sponsor and 6 consponsors), both Republicans and Democrats, from Wisconsin (2),Virginia, Vermont, Illinois, California and New York. We need 219 by December 2012 to achieve a simple majority of the House and pass this Act in this Congress. If it doesn't pass this time,we will have to start over with the new Congress that takes office in January 2013. This is not unusual for any kind of legislation, but continuing advocacy now can increase awareness and momentum and possibly accelerate passage. U.S. citizens, if your Representative does not currently support HR 2239 and you have not called or written him/her about this lately or at all, please do so. Congress is not in session for the holidays, but they will return to Washington by January 17.More details are in this IBS Impact blog post from yesterday.https://ibsimpact.wordpress.com/2011/12/18/representative-hinchey-of-new-york-co-sponsors-hr-2239-for-functional-gastrointestinal-and-motility-disorders/


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## journ3 (Feb 16, 2009)

Folks, this is still currently pending legislation and still needs attention. IFFGD has now installed Capwiz, which is a reputable software program commonly used by advocacy organizations. All you have to do is go to the link below, type in your zipcode and the software will automatically determine your Representative and generate a partial form letter. Add a paragraph or so of your own comments and your contact information. (You must do this so the Representative's staff knows you are actually a constituent/potential voter in the district and can reply to you eventually) and submit. You do not have to be an IFFGD member to use Capwiz, however if you prefer not to use IFFGD's Capwiz, you can use Congress.org as I posted earlier in this thread, or contact your Representative directly. Capwiz is quickest and easiest of the options, though.http://capwiz.com/iffgd/home/U.S. citizens, if you want Congressional leaders to do anything for the IBS community, this is a real and huge chance, but we have to ask for help en masse and keep asking for it or this will not pass in 2012 before the elections and will have to be reintroduced over and over for years. Please contact your Representatives.


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## journ3 (Feb 16, 2009)

2 more cosponsors signed on March 7. This legislation is now supported by 9 sponsor/cosponsors, both Republicans and Democrats, in Wisconsin (3), Virginia, Vermont, California, Illinois and New York (2). The U.S. National Institutes of Health also funds research in other countries besides the U.S. so this bill will help non-US citizens too. Details on IBS Impact blog.Please get over apathy and partisan politics and politics in the IBS community and work together to support this landmark legislation. People's colons do not know their income, ethnicity, citizenship or politics. We all affected by IBS, whether as IBSers, relatives, friends and professionals, and as many voices as possible can make a difference.


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## journ3 (Feb 16, 2009)

Two more cosponsors signed on this week from Colorado and North Carolina. Details and how to help get HR 2239 passed here.http://wp.me/p1FR35-cX


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