IFFGD works to inform, assist, and support people affected by functional gastrointestinal (GI) and motility disorders. For over two decades, these efforts have been made possible by the support we receive from the diverse community of patients and families, physicians, industries, and policy makers who share the common goal of seeing patient care improved.
The burdens imposed by these diseases affect not only patients and families, but also healthcare practices, and society at large. We continually work to take actions needed to raise awareness and advance understanding about these complex conditions.
In 1991, before the arrival of the Internet as a primary means of communication, we started to publish a 4-page educational newsletter entitled Participate. Our goal was to provide information that people could use so they could take part in improving their own health, and in finding a pathway to improved care and outcomes. Later, that 4-page publication became what is today Digestive Health Matters.
We have always believed that quality information plays a key role in the delivery of quality care, that all stakeholders must work together, and that patients must be engaged as essential stakeholders.
Our commitment to these principles underlies the many programs and activities that each year we are able to deliver. Whether for research, education, advocacy, or awareness, you all participate. We are pleased to thank you for your contributions as we look back at some of our activities over the past year.
Support of Research
Increased research into functional GI and motility disorders is a key issue for IFFGD. In addition to advocating for more federal dollars to support scientific advancement of these conditions, we are committed to finding ways to promote and fund investigation into better understanding in this field.
DHA Children’s GI Research Network
For several years, we have provided support to the DHA Children’s GI Research Network, enabling centers to pool data for research into children’s GI conditions. With the recent signing into law of the National Pediatric Research Network Act we are now doing what we can to help ensure that the DHA Children’s GI Research Network is in a positive position to apply for support from the National Institutes of Health (NIH).
Currently these seven centers are involved in the network:
- Nationwide Children’s Hospital, Columbus, OH
- Children’s Hospital, Louisiana State University, New Orleans, LA
- Connecticut Children’s Hospital, Hartford, CT
- Children’s Hospital of Wisconsin, Milwaukee, WI
- Children’s Memorial Hospital, Chicago, IL
- Children’s Hospital Boston, Boston, MA
- Emma Children’s Hospital, Amsterdam, The Netherlands
Grassroots Support for Research
The Digestive Health Alliance (DHA) provides a way for people to support research for conditions they care about. Active members of the digestive health community create fundraisers on DHA.org and host events to raise awareness and funds, with the proceeds being donated to IFFGD to be directed toward research.
IFFGD Gastroparesis Research Grants
In February 2014, we awarded $120,000 in grants to support research into idiopathic gastroparesis. The grants were made possible by donations to IFFGD, as well as money raised by individuals who sponsored fundraisers through DHA. We are grateful to all of you who donated in support of this research, including:
- The Zebrowski Family Foundation
- The Cheryl Aaron Memorial Fund in Pittsburgh, PA
- The Mary H. Storer Foundation
- The Annual Awareness Walks for Gastroparesis and Digestive Health in Bellingham, WA
- The Half Marathon for Gastroparesis in Pittsburgh, PA
- All of you who made individual donations
Gastroparesis is a condition where the stomach empties too slowly, resulting in symptoms that can be debilitating and in some cases life-threatening. It is challenging to diagnose and more effective treatments are needed.
After receiving applications from around the world, three investigators were chosen by our selection committee to receive the grants, each in the amount of $40,000. The grant recipients were:
- Leo K. Cheng, Ph.D., Auckland Bioengineering Institute, The University of Auckland, New Zealand
- Braden Kuo, M.D., Massachusetts General Hospital, Boston, MA
- Richard W. McCallum, M.D., Texas Tech University Health Sciences Center, Lubbock, TX
More and more people are stepping up to fundraise through, and many are continuing to increase awareness and raise funds for gastroparesis research. Some highlights from the year are below. We are looking forward to continuing this momentum to be able to call for more grants in the future to help learn more about these complex conditions.
The 3rd Annual Awareness Walk for Gastroparesis and Digestive Health
Stephanie has hosted her event for several years now and was a contributor to our gastroparesis grants presented earlier this year. Her 2014 event featured a walk, as well as awareness items and raffle opportunities. This year Stephanie raised $2,110. Thank you for your continued hard work Stephanie!
2014 Half Marathons for Gastroparesis
Geri put her feet to the pavement to raise funds for gastroparesis research and raised $1,310. This year she ran TWO half marathons for the cause. We are grateful to Geri for her determination and were happy to see her out running again this fall – thanks Geri!
The Go with Your Gut 5K
The first annual Go with Your Gut 5K, held in Hilliard, Ohio, was hosted by volunteer fundraiser Lindsay. She was also looking to raise awareness and funds for gastroparesis. Lindsay crushed her $3,000 fundraising goal, bringing in nearly $9,000 to benefit gastroparesis research through the DHA and IFFGD. Way to go Lindsay!
The Cheryl Aaron Memorial Fund
Lonnie has been raising money for gastroparesis for a number of years now. After starting the fund to honor his wife, who passed away due to severe gastroparesis, Lonnie has raised more than $20,000. His dedication to this cause is an inspiration and he was one of several DHA fundraisers whose efforts made the 2014 IFFGD Gastroparesis Research Grants possible. Thanks so much Lonnie!
Gastroparesis Awareness Gear for Gastroparesis Research
Melissa is a new DHA fundraiser this year. Her storefront, The GP Fight Store (www.gpfight.com), sells items to help increase awareness for gastroparesis. Several times this year she donated 10% of the sales of her items – totes, hats, sweatshirts, and other gear – to DHA for gastroparesis research. We appreciate your efforts to increase the awareness and understanding of this condition Melissa!
Jason’s Fund was created to help fund research into rare GI and motility disorders. Established in memory and honor of Jason Crowley, the fund is hoping to raise $5,000, and so far, $525 has been raised in support of Jason’s Fund. We are grateful to its supporters for their commitment to learning more to help others facing these difficult to diagnose disorders.
Education & Support
More and more people are looking for medical information online and finding IFFGD on the Internet. Our websites address a range of topics and conditions with information that is evidence-based and accessible to a wide audience.
Remember, information about a variety of topics can be found on our family of websites:
We also participate on social media to engage with the community. Join our discussions at:
Our free monthly eNewsletter provides news and information updates to the digestive health community. If you haven’t done so already, we invite you to sign up to receive this monthly communication, Digestive Health Monthly, at www.iffgd.org/e-news.
This April, we launched our first mobile app, IBS Info, a resource for people looking for information about IBS and chronic constipation (CC). The app is available for iOS and Android systems. In addition to medical news updates, the app covers topics drawn from our publications library relating to IBS and CC such as:
Commonly asked questions & answers
Food and diet
Talking to a doctor
Managaing daily living
Our print publications provide information about functional GI and motility disorders helping people better understand their conditions and more effectively work together with their healthcare providers. Digestive Health Matters is available online as well as in print, with distribution to people in 147 countries.
Our library of information contains more than 250 factsheets. To assist those who are just looking for the top-line basics, we began a series to address Commonly Asked Questions in an easy to read format. So far conditions in that series include: chronic constipation, cyclic vomiting syndrome, functional abdominal pain syndrome, gastroparesis, GERD, and IBS.
Awareness and Advocacy
Through a variety of efforts, IFFGD is consistently working to increase awareness for functional GI and motility disorders. Whether through outreach with educational materials and websites or advocacy efforts on behalf of people who are affected, we are dedicated to continuing to bring these issues to the forefront of science and industry, as well as to the attention of government officials and members of the public.
Advocacy in Action
Advocating for research and advancement in Washington, D.C. is becoming increasingly important. By speaking on behalf of the digestive health community and bringing patient advocates to Capitol Hill, we are educating key decision makers on the needs of those with chronic digestive conditions in order to help influence support for activities at NIH, FDA, and other health and human services agencies.
DHA Advocacy Day 2014
The seventh annual DHA Advocacy Day took place in June. Digestive health advocates, including patients, family members, and healthcare professionals, traveled to Washington, D.C. to educate Members of Congress about the needs of the functional GI and motility disorders community.
We spoke to more than 30 Congressional offices about the importance of research, education, and awareness of functional gastrointestinal and motility disorders (FGIMDs) and discussed the key issues that are most important to us for the 2014 fiscal year. Those topics were:
- House Member co-sponsorship and Senate introduction of The Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2013 (H.R. 842)
- Support for increased funding for the National Institutes of Health (NIH) to a level of at least $32 billion in Fiscal Year (FY) 2015
- Support for veterans in the FY15 Defense Appropriations bill by: House and Senate funding support of the Department of Defense (DOD) Gulf War Illness Research Program, which provides a source of funding for functional GI disorders research
- Support for funding for the National Pediatric Research Network Act, with funding for a pediatric FGIMD network
- Clarification regarding reasons and purpose for new guidance governing medical foods from the FDA
We are grateful to those that were able to join us and others that called in to their Representatives on Digestive Health Congressional Call-In Day. We hope that even more of you can help with these efforts in the future.
Support for Veterans
IFFGD has been speaking out for years about the effects that functional GI disorders have on our service men and women. We continue to advocate for funding for the Gulf War Illness Research Program in the DOD’s Congressionally Directed Medical Research Program. Since FY2012, functional GI disorders have been included among the conditions eligible for study under this program. The funding was renewed in FY2014 and in June, the Senate Appropriations Committee included a $47.5 million increase in the Peer-Reviewed Medical Research Program in its approval of the 2015 DOD Appropriations Bill.
IFFGD also provided testimony to the U.S. Department of Veterans Affairs (VA) about functional GI disorders and Gulf War Veterans’ illnesses, and the relationship between these conditions and military sexual trauma.
DDNC Public Policy Forum
On March 2–3, 2014 IFFGD again took part in the Annual Digestive Disease National Coalition (DDNC) Public Policy Forum in Washington, DC. This yearly meeting brings us together with other organizations in the field to receive legislative updates and take part in advocacy activities, allowing us another opportunity to express the concerns of the digestive health community with Members of Congress.
During the Public Policy Forum, IFFGD’s founder, Nancy Norton, was honored with the DDNC Lifetime Service Achievement Award in recognition of her service and many contributions to the digestive health community.
IBS Awareness Month
In April, Congressman James Moran (VA-8) made a statement in the U.S. House of Representatives to recognize IBS Awareness Month and urge congressional colleagues to support research efforts for IBS.
Gastroparesis Awareness Month
In August our press release, Lack of Awareness of Gastroparesis May Impact Medical Care, was widely picked up by both general public and medical professional news outlets.
GERD Awareness Week
This November marked the 16th Annual GERD Awareness Week. Our message was, Persistent Heartburn May Be a Sign of GERD: IFFGD reminds people of symptoms for GERD Awareness Week.
Providing the Patient Perspective
Speaking out on behalf of patients is at the center of our advocacy efforts. For many years IFFGD has provided this perspective to healthcare providers, industry leaders, legislators, and regulatory agencies giving a voice to patients and family members.
The 2014 NIDDK Recent Advances & Emerging Opportunities annual publication included a Patient Profile on Nancy Norton of IFFGD entitled, “Living Hour to Hour with Fecal Incontinence.” This provided an opportunity to describe the patient experience of living with and managing a chronic bowel control problem, and to help make it easier for people to seek the care they need, knowing they are not alone.
IFFGD took part in a roundtable meeting of patient advocacy and professional societies organized by the AGA and the Partnership to Improve Patient Care (PIPC). The objective was to finalize recommendations for the Patient Centered Outcomes Research Institute (PCORI), whose purpose is to conduct comparative effectiveness research that will lead to a better understanding of management and treatment options for patients, caregivers, and the broader health community.
Much was accomplished this past year and we are grateful to all of the supporters of IFFGD, as well as those of DHA, who make all of this possible. We celebrate these achievements, share our successes with you, and look forward to what next year will bring for all of us. Thank you for your continued support.