My daughter has suffered for 6 years and is getting worse . Has had 4 stomach emptying tests all different and insurance will not cover treatment that is recommended due to these tests. There needs to be revisions to enable people to get help desperately needed. To date she has not received anything to stop… Read more “Marilyn Blum”
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 want to support this bill because I too have gastroparesis and am disabled because of it.
Gastroparesis needs more attention and support. People are suffering and dying from this disease and we need to bring more attention and awareness to it. My friend is suffering from this disease; let’s spread the love.
Gastroparesis is a chronic debilitating disorder with no end in sight. It permeates every aspect of your life and your quality of life. It has searing, damaging effects on your family (my daughter) as she sees me repeatedly hospitalized or having visiting nurses who come weekly to infuse me with fluids to try and stave… Read more “Abby Levine”
I have had gastroparesis for 7 years and every year hope that a drug is found that will get rid of it. Feeling like you have a stomach bug 24/7 is no way to live. I currently take an acid reflux drug called Dexilant that my insurance has decided I don’t need 2 pills a… Read more “Robin McNamara”
My friend’s sister has gastroparesis and it’s a horrid disease! No cure. Such a massive amount of pain.
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 suffered with Gastroparesis for over 10 years. With no real change in treatments. We need help!
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 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’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 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!!
My wife Jackie has been diagnosed with this horrible disease. The disease has taken away much of her quality of life and has affected her ability work up to the high standards that she always held herself to. Don’t research what the disease is or what causes it. Look at the individual. If you really… Read more “Mark Wilhelm”
My mother in law suffers from this yucky illness and all we want is to find her a cure so she can spend time with her grandkids as much as possible without worrying about her being in pain or sick. It hurts to see a loved one in pain or constantly sick and there’s absolutely… Read more “Katja Boud”
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!
I was diagnosed after gastric abdominal surgery. Surgery was going to save my life; I am now on long-term disability. My former employer required that I apply for SSDI to continue with their benefits. Due to my medication sensitivities the only treatment options I have is a form of therapy to help me “learn that… Read more “Amy Robbins”
I am suffering with gastroparesis, and it has turn my life upside down. Seems like no one will help or knows anything about it.
As someone with gastroparesis I can tell you that this affects my daily life and everything in between. There needs to be some type of research or some type of cure better than what we have now. We need to spread awareness and have more doctors understand what we’re going through. I went from a… Read more “Isabella Serrano”
I am advocating on behalf of my best friend, Niki Harris, she has gastroparesis. She suffers with this illness and other illnesses that are associated with Gastroperesis like orthostatic hypotension and autonomic neuropathy. She suffers from dehydration and low blood pressure daily. She has to take salt tablets and make sure she stays hydrated and… Read more “Tara Coxie”
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 have many friends in the Ehlers Danlos and Dysautonomia communities who struggle with gastroparesis and they deserve a better quality of life than they now have.
My niece has Gastroparesis – I saw her lose so much weight and wither away so quickly. It took a while to diagnose. Awareness is key to saving lives and finding a cure.
I began with what was an unknown digestive disorder. After years of treatment I now have been diagnosed with GP, IBS, Gerd and a host of other GI disorders. I am not alone. There many of us struggling to get help. There is confusion about what causes it (or doesn’t), what to eat, what treatments… Read more “Charlotte Giesey”
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 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”
It’s a Very Beautiful Storm Gastric Motility and My Experiences as a Medically Complex Patient Being sick is what you make of it. And I want you to know that no matter what life throws at me, I’m still going to do something amazing. Chronic illness doesn’t define me, and it shouldn’t define you. I’m… Read more “Angelina Andreoli”
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 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 have gastroparesis and it’s very debilitating and even more aggravating when your doctor doesn’t know how to treat the disease.
I have suffered with GERD , IBS and Dysporia for 7 years. I have taken every OTC available and still I suffered. My doctor then began to try 4 different types of proton, until finally Dexilant has made my life a little more manageable. Dexilant has some awful side effects inculding kidney disease. My mother… Read more “Verna Terrell”
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”
My best friend of 37 years has this horrible disease. I’ve taken her to so many Dr appts over the years and have seen first hand how it’s affected her physically and mentally!!!! More research NEEDS to be done. SHE had to do all the research to find out what she had! So little is… Read more “Stefanie Lewis”
I’m 31 and I was diagnosed around 3 years ago. I’m a wife and a mother to 2 amazing boys that unfortunately are more used to mom being sick more often then not. It’s so hard with Gastroparesis. ER doctors never have a clue what to do. My own GI took a long time to… Read more “Angela Klotz”
I was finally diagnosed with gastroparesis in 2014, after 10 years of hell. I also was diagnosed with colonic inertia. Both of these mean my stomach and intestines don’t work. In 2016 lost my large intestines and had 3 months with an ostomy. I also was given all my nutrition from TPN. I also needed… Read more “Dawn Grant”
Having gastroparesis,is a nightmare, very painful illness, that affects mental stability,affects stomach severely not being able to digest nor eat. Constantly vomiting with an extremely lot of pain ,in addition other illnesses that develop from being malnourished, doctors nor nurses not having knowledge about this illness that slowly destroys our quality of life. I am… Read more “Madeline Concepcion”
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”
I was diagnosed with gastroparesis in 2013 when I suddenly became ill. Due to the chronic and progressive nature of this illness I am now disabled. Sadly, there are very few options for treatment…so much more needs to be done.
I have been diagnosed with gastroparesis this past December 2019 and have been the most horrible disease. You do not know if you are going to be so sick throwing up or running to go to the bathroom. The nausea and stomach pain is so severe and last but not least you cannot eat most… Read more “Catherine Monteferrante”
I have been struggling with severe gastroparesis since 2004.. I’m currently in a bad flare up of my condition and am down to only 98 pounds again. We need this!
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 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”
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”
I was diagnosed with GP in October of 2018 and I was lucky enough to find an excellent PA who diagnosed my “condition”. So many suffer from this and it gets misdiagnosed and we need research to find a better way of treating GP, especially with medications whose side affects aren’t worse than the reason… Read more “DJ Atkinson”
I am a 19 year old college student who struggles with Gastroparesis, Esophageal Dysmotility, and small bowel dysmotility. I am not able to eat or drink anything anymore. I am completely dependent on a feeding tube and a central line. It is hard being in college and not being able to participate in normal activities… Read more “Anika Chand”
I have gastroparesis. It’s been a year since my diagnosis. It’s a hideously painful disease where you want to eat but know the aftermath will be too much to bare. Or sometimes you’re so nauseous you can’t even smell food. Food becomes your enemy but you need it to survive. I’ve lost very close family… Read more “Maria Pellegrino”
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.
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 was diagnosed with Gastroparesis in 2005. My life since then has been completely devastated. My children have had to watch me waste away and basically starve to death. It has taken a toll on our entire family. There are so many of us out here searching for any help we can get. . We… Read more “Jennifer Ewell”
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”
I am now 31 and a single mother of a 6 year old boy. I was diagnosed in 2015 and for the most part of 2014 I had to go through months and months of testing and on top of that all the different medications I’m on that changes every month. In the first two… Read more “Brittnee Osborne”
My principal where I work fights so hard from this! It breaks our heart to see her dwindling away to nothing and to push so hard with a smile on her face for the sake of the staff and the children! No one should have to go through this! Fund this research! We need a… Read more “Amber Taylor”
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”
My niece Desiree is currently fighting this disease and it has severely affected her health. The gas to be further funding and research towards curing this disease!
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 have been suffering from Gastroparesis for the last 7 months and in that time have lost 45 pounds and the ability to lead a normal life. Millions suffer from this disease, which causes debilitating nausea and pain, keeping us from being able to eat or having enough energy to work and raise our children.… Read more “Adelyn Lyon”
Because I have and several of my friends have this terrible disease.. I don’t feel that the general public, as well as doctors and nurses, have enough knowledge about Gastroparesis!!
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”
I know someone suffering from this illness. Funds and research is definitely needed.
The digestive tract is just as important to the body as the heart.
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”
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”
I’ve undergone back to back hospital stays, surgeries, and procedures this year in my battle with Gastroparesis. I am reliant on a feeding tube for nutrients, and a central line for iv fluids. I am only 22, Gastroparesis, IBS, and my other medical disorders have taken much from me, and I’ve become home bound and… Read more “Sarah Baker”
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”
My husband Bob served his country , Border Guard in Germany , became a Combat soldier Special Forces in the Army 23 years. He’s in bad shape from injuries already Traumatic brain injury, shot multiple times and exposed to chemical and depleated uranium. Now he has Gastroparesis from ? Diabetes ? Here we are trying… Read more “Linda Merrell”
I was finally diagnosed with Gastroparesis and slow motility in March of 2015. After traveling to doctor, after doctor, some even out of state, not one doctor did anything to find the cause for my pain, my weight loss, my malnutrition or any other symptom I had. By July of 2017 I had been so… Read more “Kristine Bishop”
I have had gastroparesis for about ten years. It is very severe and I only am able to use tube feeding. I have spent months in and out of the hospital. My teeth are destroyed from the constant vomiting and my life is drastically changed. I’m no longer able to work or socialize as before.… Read more “Elizabeth Lambert”
To end the suffering people having dealing with the disease and the financial hardships they face also.
I have been chronically ill with this disease for going on three years and it has been the worst time of my life. I was told after the first surgery it would help. I then had the POP surgery done, again it was supposed to help. Still losing weight and can’t eat enough to get… Read more “Sue Duke”
A good friend of mine has been afflicted with gastroparesis so I know what pain and suffering she has gone through. Since there is no cure at this time, I’d like to strongly support this research.
I was diagnosed 12-16 with GP. It has completely changed my life for the worse. I was running my own business and going to nursing school. I had to quit school first because I couldn’t keep up with all the illness. I then had to cut my hours back which I am single mom of… Read more “Sharon Palmer”
My niece suffers, literally suffers, from this disease and it’s heartbreaking to watch her have to deal with all the horrible affects it has on her.
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”
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”
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”
My daughter and niece both suffer from this disease. I hope for a cure.
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”
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.
Gastroparesis has taken me from a driven 20 year old college graduate with amazing career options to a low income stay at home and work to stay alive woman. It dictates almost every aspect of my life and the lives of those around me. Without more research we are just managing symptoms with no chance… Read more “Laura Gibney”
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”
My daughter has a global motility disorder, which includes gastroparesis. She came down with this awful infliction five years ago. One night when I took her into the hospital, they nearly killed her by giving her an opioid. It had the opposite effect or increasing her pain as it slowed down her digestive system even… Read more “Alicia Goddard”
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|
|Rep. Blunt Rochester, Lisa [D-DE-At Large]||11/12/2019|
|Rep. O’Halleran, Tom [D-AZ-1]||01/21/2020|
|Rep. Rush, Bobby L. [D-IL-1]||01/29/2020|
|Rep. Van Drew, Jefferson [R-NJ-2]||02/14/2020|
|Rep. Brownley, Julia [D-CA-26]||03/09/2020|
|Rep. Suozzi, Thomas R. [D-NY-3]||03/09/2020|
|Rep. Norton, Eleanor Holmes [D-DC-At Large]||03/09/2020|
|Rep. Butterfield, G. K. [D-NC-1]||09/11/2020|
|Rep. McGovern, James P. [D-MA-2]||09/15/2020|
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