This is very important for funding for ALL IBS research
National Research and Treatment Act
Please contact your Members of Congress and urge them to become original cosponsors of the IBS and Functional GI Disorders Research and Treatment Act.
The IBS and Functional GI Disorders (FGIDs) Research and Treatment Act is an invaluable piece of legislation to the IBS/FGID patient community which would:
•Expand the research portfolio for IBS and FGIDs at the National Institute of Diabetes and Digestive and Kidney Diseases, and improve coordination of research activities conducted by other entities at the National Institutes of Health.
•Establish a data system to gain a better understanding of patient populations and identify at risk individuals.
•Establish the development and operation of centers to conduct research and training to health care providers on IBS and FGIDs.
•Establish an IBS and FGIDs information clearinghouse to improve public awareness and professional understanding.
•Provide support for training new investigators who specialize in IBS and FGIDs.
•Facilitate creation and implementation of a guidance document by the FDA for industry regarding the development of treatments, and the consequences of adverse events that may occur during post-market surveillance.
The Issue
Currently, there are legislators in both the House and Senate who have expressed interest in introducing this bill. However, they would like to see more support and particularly strong bipartisan support in Congress before they move forward. By contacting your Representative and your two Senators and asking them to sign-on to this bill as an "original cosponsor" we can build the necessary critical mass of support to ensure that this legislation is introduced.
Take Action
IBS and FGIDs affected individuals are encouraged to send letters to their elected officials which urge them to declare their support for the IBS and Functional GI Disorders Research and Treatment Act by signing-on as an original cosponsor.
•View a draft copy of the bill here (pdf)
•View a sample letter here, which you can use to assist with this outreach
If you need to identify your elected officials or their contact information, please go to www.congress.org and simply enter your zip code where prompted.
Please send final copies of your personalized letters to the IFFGD's Development Coordinator, Dane Christiansen, at dchristiansen@iffgd.org or mail to Dane at IFFGD, PO Box 170864, Milwaukee, WI 53217. Dane can ensure that your letters are hand-delivered to your representatives in Washington, DC. He is also available to answer any questions you may have.
Sample wording for your own letter/email to your representatives.
[DATE]
The Honorable [First and Last name of the Senator/Congressperson]
[Washington, DC Office Address]
RE: Healthcare Issue
Dear Senator/Congressperson [Last Name]:
Thank you for your continued leadership on healthcare issues.
I write you today as a constituent and a patient who suffers with a Functional Gastrointestinal Disorder (FGID). I wanted to let you know that the International Foundation for Functional Gastrointestinal Disorders (IFFGD) has drafted a unique piece of legislation designed to improve public health outcomes for FGID patients, the Irritable Bowel Syndrome (IBS) and Functional GI Disorder Research and Treatment Act. I hope you will consider supporting this legislation and ensuring its introduction by becoming an original cosponsor.
[Tell your story as an individual affected by a functional GI disorder.]
IFFGD is a nonprofit patient-driven organization dedicated to assisting individuals affected by FGIDs by providing education and support, and advancing critical research. Despite the prevalence and high direct and indirect costs associated with IBS and other FGIDs, little is currently known about underlying causes. Few effective treatments exist. Furthermore, the lack of clear guidelines for designing treatment protocols at the Food and Drug Administration has industry investing few resources in developing innovative therapies. The IBS and FGIDs Research and Treatment Act works to directly address these persistent issues.
Thank you again for your time and your consideration of my request. If you would like additional information on the IBS and FGID Research ansd Treatment Act, such as the other Members of Congress who are interested in taking a leadership role in this effort, please contact the IFFGD's Development coordinator, Dane Christiansen at dchristiansen@iffgd.org. I have included my contact information below so that you may update me on any action you plan to take in regards to my request.
Sincerely,
[Signature]
[Name]
[Address]
[Contact Information]
Top of Page
Support the National Congressional Resolution for IBS Research
On April 29, 2010 an IFFGD drafted Resolution was introduced expressing the sense of the U.S. House of Representatives that there is need for further study of the Functional Gastrointestinal Disorder Irritable Bowel Syndrome (IBS). Please ask you Congressperson to cosponsor and suppport H. Res. 1309.
To identify your Members of Congress and their contact information, simply go to www.congress.org and enter your zip code. Simply ask your House Member to cosponsor and support H. Res. 1309.
What the Resolution Does
This Congressional Resolution is crucial to educating Members of Congress about IBS. In addition to increased awareness and education on Capitol Hill, this resolution accomplishes the following:
•Encourages the National Institutes of Health to bolster and better coordinate their research activities of IBS and other functional GI disorders (FGIDs).
•Encourages NIH to support and increase education around IBS and other FGIDs.
•Expresses the sense of Congress that IBS and FGID research should receive additional federal funding.
•Encourages the Food and Drug Administration to improve the development and oversight of IBS treatments by providing critical guidance to industry that is currently lacking.
•Calls on the Department of Defense and the Department of Veterans Affairs to address the emerging issue of veterans with IBS and other FGIDs.
The Issue
Many Members of Congress are unaware of IBS and FGIDs and the issues affecting patients. This lack of awareness on Capitol Hill makes it difficult for the digestive health community affected by functional GI and motility disorder to advocate for certain legislative priorities, such as increased research funding. This Congressional Resolution calls legislators' attention to IBS and FGIDs to better educate them about the disorders. Furthermore, as the number of lawmakers who cosponsor this resolution increases it will send a signal across Congress that the IBS community has a powerful voice and their legislative issues should be a major priority.
Take Action
The Resolution (H.Res. 1309) was drafted by IFFGD and on April 29, 2010 was introduced with bipartisan support in the House of Representatives. You can view details by going to the Library of Congress web page. It still needs to be passed in the House. This means that a majority of Representatives need to stand up for the IBS and digestive dieseases community by agreeing to support this resolution.
Nothing motivates a lawmaker into action as much as hearing from the constituents. Please contact your House Member and simply ask them to co-sponsor and support H. Res. 1309. Let them know that research into IBS is an important issue to you. That's really all you have to do.
To identify your Members of Congress and their contact information, simply go to www.congress.org and enter your zip code.
If you have any questions, please contact IFFGD's Development Coordinator, Dane Christiansen, at dchristiansen@iffgd.org or mail to Dane at IFFGD, PO Box 170864, Milwaukee, WI 53217.
Express Your Thanks
H. Res. 1309 was introduced by Rep. Tammy Baldwin (D-WI 2); initial cosponsors were Rep. Jim Sensenbrenner (R-WI-5) and Rep. Peter Welch (D-VT-AL). If any of these House champions are your representatives, please take a moment to thank them. (Go to www.congress.org and enter your zip code.)
http://www.iffgd.org/site/advocacy/legislative-alerts/action#natlres.
I will post more as I learn more, but make sure to write your representatives.
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My website on IBS is www.ibshealth.com
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Re: Any info on the kind of research they'll do?
