Updates to IBS Impact.com for August 2016

August 19, 2016

Over the past few months, IBS Impact has been working on the latest round of updates to our main site. This is always a work in progress as new and useful information comes available, but this is a good time to draw readers’ attention to some of the changes.

There have also been new details and resources added in the latest news column on the left of the home page,  IBS page, advocacy page, research pageIBS studies page, resources pageIBS and children page and links page. Of particular interest are the progress of HR 2311, the Functional Gastrointestinal and Motility Disorders Research Enhancement Act, currently under consideration in the U.S. House of Representatives, and updated information for the recently released Rome IV international diagnostic criteria. A couple of new pediatric clinical trial opportunities have been added as well.

Readers interested in the most recent news, events, clinical trial and advocacy opportunities, and articles between main site updates, may follow this blog or our Facebook or Twitter feeds (links found on the lower right sidebar of this blog). Regardless of one’s interest in IBS, whether personal or professional, most users should find useful and interesting material and links. The current site reflects resources in six countries which are among the top sources of hits to the site and this blog.

Because of the redesign and transfer of the site to new hosting in the fall of 2015, some links embedded in older posts on this blog or search engine results relating to IBS Impact.com may result in error messages, but you should still reach the site itself. If so, please use the navigation links at the top of the site to reach the desired subpage.  No information that is still currently useful has been removed from the site, although in some cases, the location has changed. Only outdated details and occasional defunct links for which there is no replacement available at this time have been deleted.

Please feel free to check out the site here. Our goals with the website, blog and social media are to provide a varied range of current, scientifically accurate, reputable information and resources to people with IBS and their families and friends, and to encourage informed choices, proactive self-advocacy and public awareness of IBS, and the unmet medical or social needs many of us face as a result of IBS.

IBS Impact as an entity, is not directly affiliated with any other organization, site or research sponsor and receives no funding for the information we post on the main website, this blog or our Twitter and Facebook pages. We do welcome constructive collaboration and value the many individuals, websites, organizations and clinical and research entities who continue to support, encourage and amplify our efforts in various ways to benefit the cause of IBS awareness and advocacy worldwide.

Comments, suggestions, corrections of outdated links, article submissions, and clinical trials or surveys by researchers affiliated with academic, medical, or pharmaceutical entities or reputable organizations representing IBS or commonly overlapping conditions in any country are all welcome and will be thoughtfully considered.  A contact form can be found on the home page of the main site, or comments can be left on this blog.  Thank you to all of our readers and social media followers for your interest and participation.


Online Clinical Trial: The Effects of Food on IBS and IBD, Northwestern and Rush Universities, July 2016

July 24, 2016

The following online clinical trial seeking adult volunteers with either irritable bowel syndrome (IBS) or any form of inflammatory bowel disease (IBD) was received recently via the social media of Oak Park Behavioral Medicine located in suburban Chicago. Oak Park Behavioral Medicine is a private practice partnership of psychologist, Tiffany Taft, PsyD and social worker, Stephanie Horgan, LCSW. They specialize in providing psychological care to adults and children with chronic health conditions, including IBS and IBD. Dr Taft, who is also associated with Northwestern University Feinberg School of Medicine as a researcher into the psychosocial aspects of chronic gastrointestinal conditions, previously authored a guest post about stigma and IBS especially for this blog on April 15, 2013.

The italicized paragraphs below are a direct, complete quotation of all details available to IBS Impact at this time. Please address any questions or concerns about the study directly to Dr. Taft at the email address in the description.

Dr. Taft is collaborating with GI docs at Northwestern and Rush University to evaluate how food and diet treatments may affect the day-to-day lives of patients with Crohn’s Disease, ulcerative colitis, indeterminate colitis, or irritable bowel syndrome. If you’re interested, please read on…

My name is Dr. Darren Brenner and I’m an Assistant Professor at Northwestern University Feinberg School of Medicine. We are doing a research study to evaluate the experiences patients diagnosed with irritable bowel syndrome (IBS) or inflammatory bowel disease (IBD) have with food choices and, if applicable, using diet to treat their digestive symptoms. The title of the study is “Food related quality of life in irritable bowel syndrome and inflammatory bowel disease” (NU Study STU00202950). We are looking for 300 adults. If you’re between 18 and 70 years old and have been diagnosed with IBS or IBD, you are eligible to participate.

If you are interested, please email Dr. Tiffany Taft at ttaft@northwestern.edu and you will receive an email with the study website link as well as a unique participant ID and password. If you agree to participate, you will be asked to answer several questionnaires about you, your IBS or IBD treatments, your experience with the food and diet treatments, and your mood. Your participation should take about 60 minutes. Participants may enter a drawing to win one (1) $50.00 Amazon gift card once they have completed the study. Thank you!

IBS Impact welcomes researchers affiliated with academic, medical or pharmaceutical entities, or reputable organizations representing IBS or related or commonly overlapping conditions, to contact us directly with additional studies or surveys they wish to be considered for posting. A contact form is available on the main IBS Impact website.

IBS Impact makes these announcements available for general information, and encourages its members and site visitors to make their own individual, informed choices about their potential participation. Additional studies can be found by clicking on the Research– Clinical Trials sub-category in the right sidebar of this blog on our main website IBS studies page. Please be sure to check the date at the top or bottom of a given post, as many posts from this blog remain visible in search engines for several years, and studies stop accepting volunteers or conclude the trials after a period of time. IBS Impact, as an entity, is not directly affiliated with any research sponsor or organization and receives no funding from any source for studies, surveys or links we feature on this blog, the main site or social media.


Representatives Engel of New York and Pocan and Kind of Wisconsin Co-Sponsor HR 2311 for Functional Gastrointestinal and Motility Disorders

July 11, 2016

According to IFFGD/the Digestive Health Alliance and the official Congressional legislative database Congress.gov, Representative Eliot Engel (D-NY-16), Representative Mark Pocan (D-WI-2), and Ron Kind (D-WI-3) have recently signed on as a co-sponsors to the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2015.

Representative Engel is serving his fifteenth term in the House of Representatives. His current district, the 16th Congressional District of New York  encompasses the northern portion of the Bronx, which is one of the boroughs of New York City, as well as parts of suburban southern Westchester County. Representative Engel is the first co-sponsor who is also a current member of the Subcommittee on Health, where HR 2311 is  under consideration.  See the linked website for a list of all current members. Representative Engel has a long record of supporting  a wide range of veterans’ issues and health issues, as seen on his official house website. As previously discussed on this blog on August 12, 2011 and August 25, 2011, military service members and veterans are at disproportionately high risk for functional gastrointestinal disorders like IBS, which are already very common in the general population.

Representative Pocan is serving his second term in the House of Representatives. His district, the 2nd Congressional District of Wisconsin, encompasses Dane County, Iowa County, Lafayette County, Sauk County and Green County and parts of Richland and Rock Counties, including the state capital of Madison and environs. According to his official House website, Representative Pocan is a member of the House Committee on the Budget, and he supports various health and veterans’ issues.

Representative Kind is serving his tenth term as a member of the House of Representatives. His district, the 3rd Congressional District of Wisconsin, represents the western part of the state, including La Crosse, Eau Claire and Platteville. Representative Kind’s official House website can be found at the link. Representative Kind has a record of supporting veterans’ issues. He is also a former member of the Subcommittee on Health and was also a co-sponsor of HR 2239 in the 112th Congress (2011-2012) and HR 842 in the 113th Congress (2013-2014), previous versions of HR 2311 which did not pass. IBS Impact thanks him for his continuing  support over three successive Congressional terms.

If you are a constituent of Representative Engel, Representative Pocan or Representative Kind,  please take a few minutes to write or call him with your thanks for his support of the functional gastrointestinal and motility disorders community.

In officially supporting HR 2311, Representative Engel, Representative Pocan and Representative Kind  join Representative F. James Sensenbrenner, Jr. (R-WI-5) , who is the initial sponsor,  Representative Andre Carson (D-IN-7), Representative Zoe Lofgren (D-CA-19) and Representative Gwen Moore (D-WI-4), Representative David Young (R-IA-3), Representative David Loebsack (D-IA-2), Representative Keith Rothfus (R-PA-12), and Representative David Joyce (R-OH-14), and Representative Sean Duffy, (R-WI-7) If you are a constituent of any of these Representatives, please thank them as well.

U. S. citizens, if your Member of Congress is not yet a co-sponsor of HR 2311, please see the previous post from May 18, 2015 for links to the bill and more details on how to do so.  Often, it takes multiple attempts to elicit any interest from legislators, so if you do not receive a reply, do not hesitate to try again or to switch contact methods until you attract attention. Keep in mind that your Representative may be different from before because of the 2014 elections, district boundaries that may have been re-drawn, or if you have moved.

Your personal experiences as a person with IBS and/or other functional GI/motility disorders, or as a concerned family member, friend or colleague, are most effective in communicating to legislators and their staff that there are real human beings behind the statistics. However, even general expressions of support are helpful.

HR 2311 is bipartisan legislation (supported by members of both parties) and according to IFFGD discussions with IBS Impact,  is “revenue-neutral,” meaning that there will be no additional taxes or spending added to the current federal deficit if it is enacted. Discretionary funds are available at the National Institutes of Health to be allocated if Congress directs NIH, through this Act, that functional gastrointestinal and motility disorders are a priority. Congress will only do so if we, as a community, are able to show them the importance of the research, education and FDA coordination provided for in HR 2311.

NIH grants funding to researchers throughout the world, not just in the U.S., so in the long run, enactment of this Act may also benefit readers with IBS in other countries. Medical research also sometimes involves multinational teams of scientists, and in any case, study results are usually published globally, adding to the cumulative knowledge worldwide.

It is IBS Impact’s understanding that HR 2311 will not require a debate or vote on the floor of the House of Representatives, and will pass as soon as it reaches 218 sponsor/cosponsors, or a simple majority of the House. In order for this milestone to be accomplished during the current Congress, the 114th,  the necessary number of sponsor/cosponsors must be reached by December 2016. Every two years, the Congressional membership will be different as a result of elections. Thus, if HR 2311 has not passed by that time,  a similar bill will have to be reintroduced and the FGIMD community will have to start the process of gathering co-sponsors anew. This is what occurred with HR 2239 in 2012 and HR 842 in 2014. While it is quite common for legislation of various sorts to take several Congresses to pass, our continuing advocacy now can increase awareness, build momentum and perhaps accelerate passage. It is in our hands.

Check back on this blog or join IBS Impact’s Facebook page or Twitter feed for further updates on HR 2311 as they occur. Links to the social media sites can be found on the right sidebar of the blog.


Representative Duffy of Wisconsin Co-Sponsors HR 2311 for Functional Gastrointestinal and Motility Disorders

July 5, 2016

According to IFFGD/the Digestive Health Alliance and the official Congressional legislative database Congress.gov, Representative Sean Duffy (R-WI-7) has recently signed on as a co-sponsor to the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2015.

Representative Duffy is serving his third term in the House of Representatives. His district, the 7th Congressional District of Wisconsin, encompasses the northwestern and central regions of the state, including Ashland, Barron, Bayfield, Burnett, Chippewa, Douglas, Iron, Lincoln, Marathon, Oneida, Polk, Portage, Price, Rusk, Sawyer, Taylor, Washburn and Wood Counties and parts of Clark and Langlade Counties.  According to his official House website, Representative Duffy has a record of supporting veterans’ issues. As previously discussed on this blog on August 12, 2011 and August 25, 2011, military service members and veterans are at disproportionately high risk for functional gastrointestinal disorders like IBS, which are already very common in the general population.

If you are a constituent of Representative Duffy,  please take a few minutes to write or call him with your thanks for his support of the functional gastrointestinal and motility disorders community.

In officially supporting HR 2311, Representative Duffy  joins Representative F. James Sensenbrenner, Jr. (R-WI-5) , who is the initial sponsor,  Representative Andre Carson (D-IN-7), Representative Zoe Lofgren (D-CA-19) and Representative Gwen Moore (D-WI-4), Representative David Young (R-IA-3), Representative David Loebsack (D-IA-2), Representative Keith Rothfus (R-PA-12), and Representative David Joyce (R-OH-14). If you are a constituent of any of these Representatives, please thank them as well.

According to the information on Congress.gov, it appears that the bill is currently under consideration in the Subcommittee on Health. Click on the link above if you would like to see a list of its members.

U. S. citizens, if your Member of Congress is not yet a co-sponsor of HR 2311, please see the previous post from May 18, 2015 for links to the bill and more details on how to do so.  Often, it takes multiple attempts to elicit any interest from legislators, so if you do not receive a reply, do not hesitate to try again or to switch contact methods until you attract attention. Keep in mind that your Representative may be different from before because of the 2014 elections, district boundaries that may have been re-drawn, or if you have moved.

Your personal experiences as a person with IBS and/or other functional GI/motility disorders, or as a concerned family member, friend or colleague, are most effective in communicating to legislators and their staff that there are real human beings behind the statistics. However, even general expressions of support are helpful.

HR 2311 is bipartisan legislation (supported by members of both parties) and according to IFFGD discussions with IBS Impact,  is “revenue-neutral,” meaning that there will be no additional taxes or spending added to the current federal deficit if it is enacted. Discretionary funds are available at the National Institutes of Health to be allocated if Congress directs NIH, through this Act, that functional gastrointestinal and motility disorders are a priority. Congress will only do so if we, as a community, are able to show them the importance of the research, education and FDA coordination provided for in HR 2311.

NIH grants funding to researchers throughout the world, not just in the U.S., so in the long run, enactment of this Act may also benefit readers with IBS in other countries. Medical research also sometimes involves multinational teams of scientists, and in any case, study results are usually published globally, adding to the cumulative knowledge worldwide.

It is IBS Impact’s understanding that HR 2311 will not require a debate or vote on the floor of the House of Representatives, and will pass as soon as it reaches 218 sponsor/cosponsors, or a simple majority of the House. In order for this milestone to be accomplished during the current Congress, the 114th,  the necessary number of sponsor/cosponsors must be reached by December 2016. Every two years, the Congressional membership will be different as a result of elections. Thus, if HR 2311 has not passed by that time,  a similar bill will have to be reintroduced and the FGIMD community will have to start the process of gathering co-sponsors anew. This is what occurred with HR 2239 in 2012 and HR 842 in 2014. While it is quite common for legislation of various sorts to take several Congresses to pass, our continuing advocacy now can increase awareness, build momentum and perhaps accelerate passage. It is in our hands.

Check back on this blog or join IBS Impact’s Facebook page or Twitter feed for further updates on HR 2311 as they occur. Links to the social media sites can be found on the right sidebar of the blog.


Representative Joyce of Ohio Co-Sponsors HR 2311 for Functional Gastrointestinal and Motility Disorders

June 28, 2016

According to IFFGD/the Digestive Health Alliance and the official Congressional legislative database Congress.gov, Representative Dave Joyce (R-OH-14) has recently signed on as a co-sponsor to the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2015.

Representative Joyce is serving his second term in the House of Representatives. His district, the 14th Congressional District of Ohio,encompasses the northeastern region of the state bordering Lake Erie and the Pennsylvania, including  Ashtabula, Lake, and Geauga Counties, eastern Cuyahoga County, northern Trumbull County, northern Portage County, and northeastern Summit County. According to his official House website, Representative Joyce is currently a member of the House Subcommittee on Military Construction and Veterans’ Affairs.  As previously discussed on this blog on August 12, 2011 and August 25, 2011, military service members and veterans are at disproportionately high risk for functional gastrointestinal disorders like IBS, which are already very common in the general population. Representative Joyce also is a member of several caucuses supporting other specific health conditions.

If you are a constituent of Representative Joyce,  please take a few minutes to write or call him with your thanks for his support of the functional gastrointestinal and motility disorders community.

In officially supporting HR 2311, Representative Joyce  joins Representative F. James Sensenbrenner, Jr. (R-WI-5) , who is the initial sponsor,  Representative Andre Carson (D-IN-7), Representative Zoe Lofgren (D-CA-19) and Representative Gwen Moore (D-WI-4), Representative David Young (R-IA-3), Representative David Loebsack (D-IA-2), and Representative Keith Rothfus (R-PA-12) If you are a constituent of any of these Representatives, please thank them as well.

According to the information on Congress.gov, it appears that the bill is currently under consideration in the Subcommittee on Health. Click on the link above if you would like to see a list of its members.

U. S. citizens, if your Member of Congress is not yet a co-sponsor of HR 2311, please see the previous post from May 18, 2015 for links to the bill and more details on how to do so.  Often, it takes multiple attempts to elicit any interest from legislators, so if you do not receive a reply, do not hesitate to try again or to switch contact methods until you attract attention. Keep in mind that your Representative may be different from before because of the 2014 elections, district boundaries that may have been re-drawn, or if you have moved.

Your personal experiences as a person with IBS and/or other functional GI/motility disorders, or as a concerned family member, friend or colleague, are most effective in communicating to legislators and their staff that there are real human beings behind the statistics. However, even general expressions of support are helpful.

HR 2311 is bipartisan legislation (supported by members of both parties) and according to IFFGD discussions with IBS Impact,  is “revenue-neutral,” meaning that there will be no additional taxes or spending added to the current federal deficit if it is enacted. Discretionary funds are available at the National Institutes of Health to be allocated if Congress directs NIH, through this Act, that functional gastrointestinal and motility disorders are a priority. Congress will only do so if we, as a community, are able to show them the importance of the research, education and FDA coordination provided for in HR 2311.

NIH grants funding to researchers throughout the world, not just in the U.S., so in the long run, enactment of this Act may also benefit readers with IBS in other countries. Medical research also sometimes involves multinational teams of scientists, and in any case, study results are usually published globally, adding to the cumulative knowledge worldwide.

It is IBS Impact’s understanding that HR 2311 will not require a debate or vote on the floor of the House of Representatives, and will pass as soon as it reaches 218 sponsor/cosponsors, or a simple majority of the House. In order for this milestone to be accomplished during the current Congress, the 114th,  the necessary number of sponsor/cosponsors must be reached by December 2016. Every two years, the Congressional membership will be different as a result of elections. Thus, if HR 2311 has not passed by that time,  a similar bill will have to be reintroduced and the FGIMD community will have to start the process of gathering co-sponsors anew. This is what occurred with HR 2239 in 2012 and HR 842 in 2014. While it is quite common for legislation of various sorts to take several Congresses to pass, our continuing advocacy now can increase awareness, build momentum and perhaps accelerate passage. It is in our hands.

Check back on this blog or join IBS Impact’s Facebook page or Twitter feed for further updates on HR 2311 as they occur. Links to the social media sites can be found on the right sidebar of the blog.


New Rome IV Diagnostic Criteria for Irritable Bowel Syndrome (IBS) Unveiled May 2016

June 9, 2016

Just over two weeks ago at the annual professional conference, Digestive Disease Week, May 21-25, 2016, the updated Rome IV diagnostic criteria for functional gastrointestinal disorders such as irritable bowel syndrome (IBS) were officially presented to the international gastroenterology community.

As this blog reported in the February 23, 2015 post, this revision is the result of several years of collaboration by international experts in functional gastrointestinal and motility disorders  from many countries, several of whom are sometimes mentioned on this blog. The actual development was finalized in December 2014. This work was then prepared for publication in the May 2016 issue of the journal Gastroenterology. The Rome criteria are the international standard used to diagnose functional gastrointestinal disorders such as irritable bowel syndrome (IBS) and are widely considered by experts to be 98% accurate in diagnosing IBS based on symptoms without the need for extensive testing for most people. Some version of the Rome criteria has been in existence for 25 years. The previous version, came into use in 2006, and many new research insights have been gained in the last decade, so these updated criteria are a major advance for the field.

Information about Rome IV that is readily accessible to those affected by these conditions and the public is gradually becoming available, but so far, these are some of the important details relevant to the IBS community:

According to a report, “Updated and Revised Rome IV Criteria Released” by Katherine Hasal of HCPLive, an online publication for health professionals, Rome IV has begun to shift away from the current term “functional GI disorders” and toward “disorders of gut-brain interaction.”

This appears to be an intentional attempt to focus attention more precisely on one of the major issues known by researchers for many years to characterize irritable bowel syndrome and the many other gastrointestinal disorders in this category.  A functional disorder is  defined as, “a disorder for which no known physiological or anatomical cause has been identified,” in contrast to an organic disorder, “a disorder caused by a detectable change in the physiology or structure of an organ” (Free Dictionary).  Traditionally, the medical profession has separated IBS and related gut-brain disorders from GI disorders evident on currently available clinical tests, such as inflammatory bowel disease or celiac disease, in this manner. To this day, decades after expert IBS researchers began to show otherwise, this distinction has led many people with IBS to misunderstand why “nothing is wrong, ” and many health care providers, families, friends and the general public to dismiss IBS as in one’s head, not real, or real but trivial. The Rome Foundation Rome IV Frequently Asked Questions page states in part, “We also expect to show with Rome IV that we can finally discard the functional-organic dichotomy that tends to stigmatize these disorders. Functional GI disorders are now understood as having abnormalities in mucosal immune dysfunction and the microbiota.” (para. 2)  IBS Impact hopes that this change in terminology will contribute to the continuing gradual education and awareness on these important matters.

Specific to IBS, there are several changes in the definition. As summarized by Olafur Palsson, Psy.D, a full professor and researcher at the University of North Carolina Center for Functional GI and Motility Disorders who was a member of the Rome IV committees, the Rome IV criteria for IBS are:

“Recurrent abdominal pain on average at least 1 day a week in the last 3 months associated with two or more of the following:

1.Related to defecation

2. Associated with a change in a frequency of stool

3. Associated with a change in form (consistency) of stool.

Symptoms must have started at least 6 months ago.”

Significant differences between Rome IV and Rome III mentioned by Dr. Palsson are: “Discomfort” has been removed from the criteria; only what is described as “pain” meets the major criterion. The threshold for symptomatic periods has been raised to an average of once a week from the previous three times per month.  It is no longer assumed that pain necessarily begins at the same time changes in stools occur, only that the symptoms are associated. Pain relief after defecation has been removed from the criteria and replaced by pain related to defecation. Finally, subtyping of IBS into diarrhea-predominant, constipation-predominant, mixed or unsubtyped is now not dependent on specific numerical percentages of specific stool types but on the patient’s report of the frequency of types based on the standard Bristol Stool Scale.

In another posting from Digestive Disease Week, Dr. Palsson shared a graph based on his and his colleagues’ study of 6300 people in a population-representative Internet survey, allowing them to estimate that the overall prevalence of IBS in the United States, Canada and the United Kingdom dropped to 5.7% under Rome IV from 10.7% under Rome III. According to Dr. Palsson, the percentage in each of these individual countries is statistically similar to one another under both criteria.  The decrease is apparently because of the tightening of the criteria to include only pain and to exclude discomfort. IBS Impact notes for context that previous estimates of the prevalence of IBS have ranged anywhere from 9-23% worldwide or 10-20% in the United States specifically depending on the source, so Dr. Palsson et al’s results can most likely be regarded as on the conservative end of the range.

Finally, as this blog reported on October 11, 2015, the Rome Foundation has also released with Rome IV a new tool for physicians that did not exist in previous versions of the Rome criteria. The Multidimensional Clinical Profile (MDCP) incorporates 5 categories aimed at capturing individual aspects of a given patient’s physiological, psychological or social situation or history that may affect his or her IBS. In an interview with Family Practice News, a publication for physicians, linked on this blog at the time, Douglas Drossman, MD, MACG, the president of the Rome Foundation along with many other pivotal titles and roles in the field over his 40+ year career,  expressed the hope that the new MDCP will assist physicians in providing a more precise diagnosis and targeted treatment depending on the particular patient’s individual needs.

With the release of Rome IV, the Rome Foundation and other organizations have new opportunities to increase their education and awareness efforts for disorders of gut-brain interaction like IBS. Two such examples are the University of North Carolina Center for Functional GI and Motility Disorders’ continuing education event on Rome IV for health professionals and 2016 Patient Day on June 25 and June 26, 2016 respectively as highlighted on this blog on May 8, 2016. IBS Impact will continue to follow developments as entities in the FGIMD community update their materials, resources and websites to reflect the recent changes.

IBS Impact thanks all of the experts involved in Rome IV, who are constantly working to improve diagnosis, treatment, research and functional GI education for those of us who live with these conditions and the professionals who may provide care to us. With better tools and greater awareness, many more of us will experience increased quality of life in the long run.


Virtual Advocacy Day for Functional Gastrointestinal and Motility Disorders Is June 23, 2016

May 20, 2016

IFFGD has scheduled its annual event, Virtual Advocacy Day (known in some past years as Congressional Call-In Day), in support of HR 2311, the Functional Gastrointestinal and Motility Disorders Research Enhancement Act for June 23, 2016.

Currently, HR 2311 is officially supported by 7 members of the U.S. House of Representatives, representing both political parties and 5 states. They are the initial sponsor, Representative F. James Sensenbrenner, Jr. (R-WI-5) and co-sponsors, Representative André Carson (D-IN-7), Representative Zoe Lofgren (D-CA-19),Representative Gwen Moore (D-WI-4), Representative David Young (R-IA-3), Representative Dave Loebsack (D-IA-2) and Representative Keith Rothfus (R-PA-12).

Virtual Advocacy Day is an excellent opportunity for constituents of current supporters to express their appreciation to their legislators, as well as  for U.S. citizens whose Representatives are not yet co-sponsors to advocate for their support. On June 23, IFFGD and other IBS sites, including IBS Impact, strongly encourage all U.S. citizens with all functional gastrointestinal or motility disorders (for example, irritable bowel syndrome, GERD, gastroparesis, chronic idiopathic psuedo-obstruction, Hirschsprung’s disease,  functional (recurrent) abdominal pain, cyclic vomiting syndrome, functional dyspepsia and many others, which collectively affect at least 25% of the population), concerned family members, friends, co-workers or classmates, health and human service professionals who work with people with functional GI or motility disorders, to call, write  and/or tweet their Representatives about HR 2311. A strong, unified presence by many voices on the same day will make an impression that can pave the way for additional support.

If you know the member of the federal House of Representatives who represents you, the direct telephone number for his or her Washington, DC office and an email contact form can usually be found on his or her official website, which can be located by an Internet search of his or her name. Keep in mind that your Representative may be different from before because of subsequent elections, district boundaries that may have been re-drawn, or if you have moved. If you are not sure who is your Representative, you can look up this information at  http://www.house.gov/representatives/find/ or call the U.S. Capitol switchboard at (202) 225-3121.

During business hours Eastern time, June 23, if you choose to call your Representative’s office, identify yourself as a constituent and give your name and the town or city in which you reside. Ask to speak to the staff member who deals with health issues. You may be asked for your street address or phone number. This is to confirm that you do live in the Representative’s district and/or to allow the office to contact you to follow up. If you are nervous, in advance of calling, write down notes for yourself or a short presentation to read. You do not have to be an excellent speaker, just a person that the legislator and his or her staff will see as a real person with real needs. Be polite, keep the conversation on topic and limited to a few minutes, and thank the staff person for his or her time. At a minimum, clearly state that you wish for the Representative to support HR 2311, or express your thanks if he or she has already signed on.

Beyond this, you may choose to briefly explain your personal interest and/or experience with functional GI or motility disorders (for example, have had/family member has had irritable bowel syndrome for X years and has had difficulty finding appropriate treatment) and/or why functional GI and motility research and education provided for in HR 2311 are important in general such as what a functional GI or motility disorder or  your specific one of interest, like IBS,  is, how many people it affects, usually affects both genders, all ages, all ethnic groups  that IBS/functional GI disorders are usually chronic. often misdiagnosed or mistreated and effective treatments, providers and local community services are limited. IFFGD has suggested talking points on its website for Virtual Advocacy Day 2016. Thank the staff member again before ending your call. If the staff member who deals with health issues is not available, leave a brief message with the above details on voice mail or with the staff member who answers the phone.

If emailing, see some suggestions in the May 18, 2015 post. It is rare for such advocacy calls and emails to result in an immediate commitment to a particular bill, but one purpose of Virtual Advocacy Day is to create awareness of the needs that affect large numbers of people and momentum for increasing Congressional support.

For more information on HR 2311 and advocacy strategies, including links to the bill, click on the HR 2311 category in the right sidebar of this blog to see all posts on this topic.

IBS Impact urges all U.S. citizen readers of this blog to participate in the important and easy advocacy effort and to spread the word among your supportive relatives, friends and functional GI and motility disorder groups.  The progress of HR 2311 is in our hands.

Check back on this blog or join IBS Impact’s Facebook page or Twitter feed for further updates on HR 2311 as they occur. Links to the social media sites can be found on the right sidebar of the blog.


Follow

Get every new post delivered to your Inbox.

Join 1,004 other followers