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Gastroparesis: Fighting For Change > Support H.R. 3396 > Crystal Marshall

Crystal Marshall

Posted on September 9, 2019 by Debbie Popp

The digestive tract is just as important to the body as the heart.

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Gastroparesis: Fighting for Change

11/06/26

Gastroparesis: Fighting for Change

Though the authors frame this as a helpful tool to remove "patient burden," I see this as a monitoring device designed to require "proof" of illness – because patients, of course, cannot be believed. Isn’t that a real concern here?Medical policing. I am not on board."Preliminary findings suggest audio-based technologies may provide an objective approach to detecting vomiting and retching, with future automation needed to support scalable implementation…In conclusion, this exploratory study supports the feasibility of audio-based detection of retch and expulsion events in patients with gastroparesis and provides preliminary evidence of convergent validity." Opinions?
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Evaluation of an audio-based monitoring system for detecting retching and vomiting in gastroparesis: an observational cohort study – npj Gut and Liver

www.nature.com

This study evaluated a novel, audio-based digital monitoring system for detecting retching and vomiting (expulsion) events in a noninterventional, longitudinal study in 25 participants with gastropare…

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Gastroparesis: Fighting for Change

11/06/26

Gastroparesis: Fighting for Change

Enterra Gastric Stimulator Update:To better serve patients, the FDA will permit distribution and implantation of the stimulator (without penalties for doctors or the manufacturer) under an enforcement discretion policy. So, although it has not yet been granted formal approval, patients may still access the device. Standard protocols and safety measures will still apply.Please consult your physician for further information about scheduling this procedure.
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Gastroparesis: Fighting for Change

11/05/26

Gastroparesis: Fighting for Change

"In one of my first actions as Acting Commissioner, I convened a roundtable of rare disease advocates to familiarize myself with the concerns of the rare disease community. I did so because I firmly believe there is nothing more vital than ensuring those who often feel unheard are given a clear voice."This was a necessary and welcome move. You should be commended. But please know that there are many underrecognized and underserved communities that also must be heard. #Gastroparesis patients have only one FDA-approved medication: Reglan/Gimoti, which comes with a black-box warning. The Domperidone Expanded Access Program ended in 2024, leaving patients whose lives were greatly improved by this medication with no safe, effective alternatives. No novel medications have been approved in more than 45 years. We must have a voice!#CureGPU.S. Food and Drug Administration
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Delivering Answers and Hope for Rare Disease Families

www.fda.gov

Rare diseases present our most formidable challenge and our greatest opportunity to speed life-saving treatments and cures to the patients who need them most.

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Gastroparesis: Fighting for Change
updated their status.

11/03/26

Gastroparesis: Fighting for Change
This content isn’t available right now

When this happens, it’s usually because the owner only shared it with a small group of people, changed who can see it or it’s been deleted.

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Gastroparesis: Fighting for Change

11/02/26

Gastroparesis: Fighting for Change

SURVEY: Gastroparesis and GI Motility Disorders Patient Support App KeepnAI is building an app that I believe might be useful to the GP community. It is designed to work alongside healthcare teams to give people personalized, day-to-day guidance on eating, nutrition, hydration, and medication routines. The co-founder, Dr. Yosi Gozlan, has developed a survey to gauge our interest, experiences, and needs. He writes:"We’re starting where any patient tool should start: by listening. Our new anonymous survey asks people with gastroparesis and other GI motility disorders what they deal with day to day, what support they have now, and what would actually help. Their answers will shape how KeepnAI guides meals, fluids, nutrition, and medication timing. It will work alongside their care team, never instead of it."The survey is anonymous and takes less than 10 minutes to complete. At the end of the survey, you will be asked if you would also be interested in beta testing the app for free. If so, you will then be directed to a separate contact form.Here is the link to the survey: tally.so/r/q54ljGThank you for your help!
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KeepnAI | Gastroparesis and GI Motility Disorders | Patient Support app | Survey

tally.so

Made with Tally, the simplest way to create forms.

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Gastroparesis: Fighting for Change

10/31/26

Gastroparesis: Fighting for Change

www.medscape.com/viewarticle/naronapride-eases-gastroparesis-symptoms-phase-2-trial-2026a10015ci
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Naronapride Eases Gastroparesis Symptoms in Phase 2 Trial

www.medscape.com

Naronapride, an investigational prokinetic, leads to greater improvements in gastroparesis symptoms than placebo when administered at 20 and 40 mg three times daily, a phase 2 trial shows.

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Gastroparesis: Fighting for Change

10/31/26

Gastroparesis: Fighting for Change


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Gastroparesis: Fighting for Change

10/30/26

Gastroparesis: Fighting for Change

www.technologynetworks.com/drug-discovery/news/soft-robot-slithers-through-the-gut-to-image-biops…
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Soft Robot Slithers Through the Gut Like a Snake To Image, Biopsy, and Treat Disease

www.technologynetworks.com

Researchers developed a snake-inspired robotic enteroscope for the small intestine. In animal studies, it performed imaging, drug delivery, and tissue sampling. The approach could improve the diagnosi…

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Gastroparesis: Fighting for Change

10/29/26

Gastroparesis: Fighting for Change

Rare Patient Voice is looking for patients who wish to share patient and/or caregiver input via paid illness-related surveys and interviews. You can sign up at this link: rarepatientvoice.com/mrvhOnce you sign up, Rare Patient will directly email you relevant opportunities when they arise.
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Let’s Get Started – Rare Patient Voice

rarepatientvoice.com

Let’s Get Started Are you a patient or family caregiver with something to say? Make your voice heard by participating in paid surveys, interviews and online communities! Start talking to the right p…

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Gastroparesis: Fighting for Change
updated their status.

10/29/26

Gastroparesis: Fighting for Change
This content isn’t available right now

When this happens, it’s usually because the owner only shared it with a small group of people, changed who can see it or it’s been deleted.

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