What does it mean to be an advocate? Advocates are people who speak out about something they believe in on behalf of themselves and/or others. Outreach to Members of Congress informs policymakers about the needs of people affected by digestive health issues and how they can take meaningful action. Digestive health advocacy through IFFGD brings concerned parties together to ensure that we carry clear, impactful messages. Adding your voice to this growing chorus helps expand critical research, initiate important legislation, and facilitate the development of new treatment options. It can be as simple as sending an email or making a call to a legislative office. Here are the experiences of people living with the challenges imposed by functional GI disorders. Through IFFGD they have put their hopes for change into action.
April 1, 2021
Tina is a strong patient leader and active advocate for those impacted by chronic GI conditions. Like many people with multiple chronic GI conditions, Tina has had a long illness journey that is still ongoing. Throughout her many obstacles created by her GI conditions, Tina is actively making her voice heard to improve the lives of all those impacted by GI illness. In this article Tina discusses some of the key aspects of her illness journey.
February 8, 2020
John is a highly active patient and advocate. He is impacted by multiple conditions, including pancreatitis, GERD, gastroparesis, and nonalcoholic steatohepatitis (NASH). Like many chronic GI patients, John’s life has been heavily impacted by his diagnosis. Although his patient journey has been difficult, he found a passion and calling in advocacy.
John’s story provides great insight into various types of advocacy that are important to ensure patient voices are heard and considered.
November 16, 2020
I am a Gastroparesis patient and advocate. I was diagnosed with Gastroparesis almost 5 years ago. Seeing the lack of treatment options and information available to patients, I knew that I wanted to help in any way that I could. I became involved with the Gastroparesis community on Facebook and quickly realized that there were opportunities to spread awareness and seek some unity.
October 7, 2020
My story is not unique, and I hope by telling it, I can help others who are currently in the thick of their disease. I was born with two things: anxiety and a tummy ache. Some would say one causes the other. People even use the phrase “which came first, the chicken or the egg” but in the end, it doesn’t matter.
June 8, 2018
It took my sister, and my family, three years, four diagnostic pediatric hospitals, and five cities to find out what was wrong. That is the reality of being rare. My sister is rare. Rare diseases are an important and overlooked plight. We need to make the need for a better quality of life, treatment, and care a reality for the millions of people who suffer from rare diseases.
August 18, 2017
I am an advocate for Functional Gastrointestinal and Motility Disorders (FGIMDs). I started the group Weston’s World on Facebook to give updates on my son, Weston, who has functional GI disorders and multiple motility disorders, to advocate and raise awareness for FGIMDs, and to find other families struggling with the same or similar FGIMDs.
August 4, 2014
As the most recent addition to the IFFGD staff I had not before experienced an IFFGD Advocacy Day, nor, for that matter, had I even previously been to Washington, D.C. So, I was in for quite the couple of days…
May 15, 2014
On April 22, 2014, I met with Congressman André Carson (IN) to discuss the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2013 (H.R. 842) and provide him with some additional information regarding these disorders…
August 9, 2013
As my plane landed in Washington, DC, I could see the iconic sites out the window. It’s almost impossible not to be affected by them. My eyes gazed over the Washington Monument, the Jefferson Memorial, and settled on the Capitol. That stately building was my destination…
July 10, 2013
Since founding the Cheryl Aaron Memorial Fund last March, Lonnie has become super involved in advocating, raising awareness, and funding research for gastroparesis…
June 20, 2012
The last speaker at the June 20, 2012 congressional briefing on functional GI and motility disorders sponsored by IFFGD was Hollie. She shared her experience about life with gastroparesis…
Natalie and Grant
May 4, 2012
In November of 2011, after a “reality check” visit with Dr. Di Lorenzo, at Nationwide Children’s Hospital, I realized my best opportunity for Grant to live a long and happy future lies in our HOPE for advancement in research and available medications. It was at this…
August 25, 2011
Over the past few months, with the help of the staff from the IFFGD, I’ve written letters to my Congressman and Senators regarding issues that affect those with gastroparesis. The IFFGD staff suggested it might be good to follow up on my letters with a personal visit. At first…
Reneé and Erin
June 14, 2011
My name is Reneé. I am married to my wonderful husband Mike of 22 years, and am a mom of a 15-year-old daughter and an 8-year-old son. We live in the Florida panhandle and I work as a CPA in a small firm. My GI problems started about 3 years ago.
March 10, 2011
IFFGD Advocate Tanjie sat down to speak with fellow advocate, Mollee, about her experience at the 2011 IFFGD Advocacy Day.