We are literally starving to death, treated horribly by doctors and labeled as drug seekers when we come into the ER for flare-ups. As a diabetic my sugar gets processed too fast or not fast enough, making it very danger for diabetics. Symptoms are barely treated and we’re tired of hurting and being nauseous, and… Read more “Heather Hughes”
I have had type 1 diabetes since I was 13, I am now 45. GP is a concern. I also lost a very dear friend to idiopathic GP she fought this disease for 20 years. The horrific pain and nausea were just some of the things she endured. Her and so many others deserve to… Read more “Stacy Wellinger”
I would love for this bill to be supported because I am someone who lives with gastroparesis. The lack of treatments, and having no cure isn’t acceptable. We need to do more for the gastroparesis community. Please, please help us! We need you!!
About 10 years ago, Gastroparesis began affecting my sisters life. As a wife, mother and teacher, her life has been changed in every way. I cannot even begin to describe her journey, but she sure can. She can name every medicine, procedure, complication, and more of her own personal experience because she has traveled the… Read more “Karen Lewis”
Gastroparesis is a debilitating disease. Just when you think you are on the right track and doing better you get knocked back down again. When I eat it feels like I am eating shards of glass, or that someone has their fingers dug on either side of my rib cage pulling as hard as they… Read more “Melissa McClure”
Please help find a cure!!!! Have you ever had the flu? . . . 24/7/365 for 8 years. There are good days and there are weeks or months that seem endless. I’ve lost 70 pounds and in a 24 hour period can fluctuate 10 or more pounds (less or more). My partner Eric and my… Read more “Jana Johnsen”
I am a type one diabetic and I also suffer from chronic gastroparesis. My life is not easy but I do the best I can. A huge factor I’ve noticed that is negatively affecting the gastroparesis community is the fact that very few people know about this chronic and debilitating disease. Please help us inform… Read more “Amber Jones”
I was diagnosed with gastroparesis about 8 years ago. There has been little help offered from various doctors at various hospitals. There is not enough education on this disease and not a lot of professionals looking for answers. I get almost all of my support from others with the disease. Doctors have offered little as… Read more “Cristina Gibson”
I’m new to this disorder but am suffering so badly I can’t work and a fear losing my job and insurance. Please help us.
I have been dealing with Gastroparesis for 6 years, it has been the biggest struggle of my life. Please support HR 3396 to help me and everyone else living with disease have hope for our future.
I would like this bill to be supported because like many others, my life matters. I am a mother of 4 beautiful children that is part of our future. I was making my way towards teaching our future and after waking one night extremely ill, it was all taken away from me, my children, and… Read more “Monica Slaughter”
The idea that anyone would have to live with this condition is heartbreaking. Living with a feeding tube, removal of gall bladder and surviving on a mere 500-600 calories a day, my aunt has been more than a trooper. We owe it to those with gastroparesis to do something about it!
I was diagnosed with GP Aug 2,2017 resulting from a botched procedure in October 2015 due to bleeding ulcers. I am in constant pain and am nauseous all the time. I have lost over 85lbs & still losing. I am slowly & painfully starving to death. This disease not only affects me but my whole… Read more “Leslie Kimbrell”
I am a 38 year old man with idiopathic gastroparesis. I am on a GJ feeding tube and down from 250 lbs to 120 lbs. They still have no idea what’s causing this in me and insurance and regulations lock up diagnostic and treatment options along with not helping with tube formula. This is completely… Read more “Jesse Nuckolls”
I’m writing this in hopes to help bring awareness and hopefully a cure to a horrible disease called gastroparesis. My beautiful daughter,Marni, suffered from GP for almost 10 years before she passed away from the complications it causes. Having GP is worse than having the flu each and every day of your life. My daughter… Read more “Robyn Herskowitz”
I have gastroparesis and it’s very debilitating and even more aggravating when your doctor doesn’t know how to treat the disease.
I was diagnosed with Gastroparesis, GERD, esophageal dysmotility, and intestinal dysmotility. My doctors believe these disorders are the result of an autoimmune disease. I have tried all of the available treatments and nothing has helped. My options are limited and my quality of life has significantly decreased. I was a high performing public school principal… Read more “Jacquelyn Wilhelm”
I have suffered from diabetic gastroparesis for a decade. I’ve almost lost my life several times and I’m only 31. I’m hospitalized roughly every four weeks for motility related illness. Everything from sepsis to diabetic ketoacidosis. Here’s the kicker, mines not even close to how bad some get. If this isn’t done for adults, then… Read more “Shauna Cooper”
It’s time for the suffering to stop! This disease and the people that are fighting it , deserve as much attention and funding for research as Crohn’s, IBS & plenty of others gets.
My story began about 8 years ago. I was overweight 185 and feeling sick. I got onto a serious health kick lost a few pounds but in the process I kept getting sicker. Who knew that the fruits and vegetables I was eating were making me sicker. Having gastroparesis is like losing your identity. Trying… Read more “Benita (Bennie) Price”
I know someone suffering from this illness. Funds and research is definitely needed.
My mother (Dena Shover) lives with gastroparesis and I HATE to see her suffer from this debilitating disease. Nobody should have to suffer from this. This bill needs to be passed so there is more awareness, funding and hopefully a cure.
My Sister By The Grace of God; Stephanie, is Fighting Gastroparesis Everyday. I know what it’s like fighting a illness/disease. I have a few myself. I Support All Awareness Illnesses and Diseases; Especially those that affect My Loved Ones, and Myself.
I have gastroparesis. There is no cure. I am exhausted all the time. I am deeply saddened by people dying every day from this illness. We need a cure!
To end the suffering people having dealing with the disease and the financial hardships they face also.
My daughter in law suffers from this horrific and debilitating disease. Presently we don’t have an effective treatment or cure due to lack of research and awareness of this disease. I support this bill 100% . It is very critical and important that further research and financial assistance is made available to improve awareness of… Read more “Dalia Castillo”
I suffer with this horrific disease that I would not wish on anyone. Not many treatments and not enough Dr’s who truly understand the disease and how to help their patients.
I would love for you to support this bill as it truly affects me personally as I consider myself to be a Gastroparesis Warrior. I have been sick since September 30, 2018 and was diagnosed on February 6, 2019. This affects my life every day in a multitude of ways. I have missed 63 days… Read more “Desiree LaFontaine”
I have this disorder so does my Mom I don’t get any treatment for it and it has made my life hell. I have GERD, IBS-D and many food allergies and intolerance and I seem to only get more. I’m 40 and wear depends because I fear leaving the house without them. I’m nauseous everyday… Read more “Shannon Price”
I was diagnosed with Gastroparesis five years ago. However I have had gastrointestinal issues for 15 years. Gastroparesis has affected my life tremendously. I am no longer able to work and have a normal life. I stay malnourished, dehydrated, nauseous, and in a lot of pain. Two years ago the doctor placed a gastric stimulator… Read more “Stephanie Reffitt”
My nine-year-old son was diagnosed with gastroparesis this year. He has struggled with symptoms since he was four. We have visited multiple doctors from different specialized fields over these four years trying to figure out why he continued to suffer from extreme stomachaches, constant nausea, malnutrition, losing weight, food intolerances, and constant fatigue. He has… Read more “Debbie Riney”
After watching my beautiful granddaughter Marissa fall victim to this terrible debilitating disease, it stole her hopes and dreams .She graduated from high school full of hopes and dreams. She joined the Navy and was to report to the school for nuclear engineering to train for duty on a submarine. This thing struck her down… Read more “Dorothy Burkhart”
For research, effective treatments, education to medical field, awareness, it’s debilitating to live with!! It affects my other issues and has made them worse. There is no cure!!! Diagnosed 2006 and still have no treatment or cure. Getting worse. Uncontrolled diabetes, has caused kidney failure, constant nausea, vomiting and dehydration to name a few. Had… Read more “Dena Shover”
I have been suffering with Gastroparesis and swallowing issues for a year now and can’t believe that the treatments are so limited. The medicine that’s out there is so dangerous and make things worse with horrible side effects. We need more we need a cure!!!
I have had Gastroparesis since I was born, every day is a challenge just to survive. I suffer from nausea, vomiting, bloating, have had multiple test done, surgeries including gastric stimulator which did not work for me. There is currently no cure for Gastroparesis we need awareness and funding for research. Please support this bill.… Read more “Amber Simon”
The digestive tract is just as important to the body as the heart.
Please support H. R. 3396, the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2019, which was introduced in the House Energy & Commerce Committee by Rep. James F. Sensenbrenner, Jr. (R-WI), on June 20, 2019. This bill would expand research, increase funding, and promote awareness and understanding of devastating functional gastrointestinal and motility disorders which greatly impact the lives of millions of sufferers.
These disorders, which include gastroparesis, Irritable Bowel Syndrome, dysphagia, dyspepsia, GERD, Cyclic Vomiting Syndrome, Chronic Intestinal Pseudo-Obstruction, and numerous other digestive tract disorders and diseases, are truly life-altering, commonly debilitating or life-threatening, and often have few (or no) safe, reliable, and effective treatments or cures. Available treatment options are frequently accompanied by serious side effects and risks as well. The millions who suffer from FGIMDs deserve awareness and expanded educational efforts on their behalf, increased research funding, and better, more effective treatments or cures.
A brief summary of the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2019 as established by the Library of Congress reads as follows:
“This bill amends the Public Health Service Act to require the National Institutes of Health to expand, intensify, and coordinate its activities with respect to functional gastrointestinal and motility disorders (FGIMDs), including by:
- expanding basic and clinical research into FGIMDs by implementing the research recommendations of the National Commission on Digestive Diseases,
- providing support for the establishment of centers of excellence on FGIMDs,
- supporting innovative approaches to educating health care providers and patients regarding strategies that improve patient-provider relationships and care,
- directing the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) to provide the necessary funding for the continued expansion and advancement of the FGIMDs research portfolio, and
- directing NIDDK and the Eunice Kennedy Shriver National Institute of Child Health and Human Development to expand research into FGIMDs that impact children.
The Department of Health and Human Services may engage in public awareness and education activities to increase understanding and recognition of FGIMDs.”
Please ask your congressional representative to expand research, increase funding, and promote awareness of functional gastrointestinal and motility disorders by supporting H. R. 3396. You can find additional information and read the text of the bill at https://www.congress.gov/bill/116th-congress/house-bill/3396 or https://www.govtrack.us/congress/bills/116/hr3396. You can find contact information for your representatives at https://www.govtrack.us/.
Thank you for your consideration!
*Please note: This bill was formerly known as H. R. 2239, H. R. 842, H. R. 2311, and H.R. 1187. All four bills died in previous congressional sessions; H. R. 3396 is the current (116th Congress) reintroduction. It is essentially a new bill and must begin the entire process again if it is to be passed. At the time of this writing, this bill had only 6 cosponsors, and we desperately need additional support. Skopos Labs, a data analysis company which evaluates congressional bills, has given H. R. 3396 only a 5% chance of enactment. This bill must pass out of committee, be approved by both the House and Senate in identical form, and be signed by the president by January 3, 2021, to be enacted as law. If it fails at any point in the process, it must be reintroduced in the next congressional session and begin its journey again. The bill gains support with each reintroduction, but we need advocates to contact their representatives and encourage them to cosponsor the bill in order to make significant progress toward enactment.
“H.R. 3396 — 116th Congress: Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2019.” www.GovTrack.us. 2019. July 3, 2019. https://www.govtrack.us/congress/bills/116/hr3396
“H.R.3396 – 116th Congress (2019-2021): Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2019.” Congress.gov | Library of Congress – https://www.congress.gov/bill/116th-congress/house-bill/3396/all-info
Rep. Sensenbrenner, F. James, Jr. [R-WI-5]* (original sponsor)
|Rep. Moore, Gwen [D-WI-4]*(original cosponsor)||06/20/2019|
|Rep. Fitzpatrick, Brian K. [R-PA-1]||06/27/2019|
|Rep. Price, David E. [D-NC-4]||06/27/2019|
|Rep. Pocan, Mark [D-WI-2]||07/11/2019|
|Rep. Perlmutter, Ed [D-CO-7]||07/18/2019|
|Rep. Neguse, Joe [D-CO-2]||07/24/2019|
|Rep. Kind, Ron [D-WI-3]||07/30/2019|
|Rep. Porter, Katie [D-CA-45]||09/11/2019|
|Rep. Massie, Thomas [R-KY-4]||09/11/2019|
|Rep. Rose, Max [D-NY-11]||09/11/2019|
|Rep. Gosar, Paul A. [R-AZ-4]||09/20/2019|
|Rep. Loebsack, David [D-IA-2]||09/25/2019|
|Rep. Vela, Filemon [D-TX-34]||10/28/2019|
|Rep. Lee, Susie [D-NV-3]||10/28/2019|
Source: “H.R. 3396 — 116th Congress: Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2019.” www.GovTrack.us. 2019. October 26, 2019. https://www.congress.gov/bill/116th-congress/house-bill/3396/cosponsors