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Gastroparesis: Fighting for Change

08/29/26

We have organized a "Demand Recognition" campaign a couple of times over the past few years. As some of you may recall, as part of our ongoing mission to shed light on #Gastroparesis and establish competent and compassionate care for all patients, we created information packets that were sent via postal service and e-mail to several relevant medical associations, organizations, schools, clinics, and policymakers.These packets included a personal introductory letter detailing our current situation, a list of “demands” designed to address the most pressing needs in our community, survey results indicating the extent of our need, and numerous patient stories designed to enlighten them on our plight.Additionally, we made an online form available (with a signature line) that listed these demands, allowing anyone who wished to participate to print and send the letter. We also created, printed, and sent to community members, upon request, free "rack cards" and brochures (with the same information) suitable for mailing or drop-off.Despite our best efforts, participation was low, and the campaign fell short of our expectations. We received a few kind responses (notably from the FDA and the ANMS), but it would be inaccurate to say the campaign led to meaningful changes. It is difficult to understand why participation and response rates were not higher. In the future, if we were to try again, we would likely list the same demands but ask for more specific actions on the part of the organizations and parties we contacted. Our reach on social media is limited, and that likely hampered our efforts as well. Future campaigns are not out of the question, but we would need mass participation and buy-in to achieve the impact we desire.We can only hope that our previous campaigns at least touched the hearts of the individuals who received our packets, and that, one day, the changes we seek will come to fruition.We urge everyone affected by Gastroparesis and everyone responsible for providing and improving care to step up and be the #GPChangemakers we desperately need.#CureGP
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Gastroparesis: Fighting for Change
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08/29/26

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Gastroparesis: Fighting for Change
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08/28/26

Tahlequah, OK
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Gastroparesis: Fighting for Change

08/28/26

Gastroparesis Awareness Month Proclamation 2026: Tahlequah, OklahomaCongratulations and many thanks to Ms. Amber Simon!
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Gastroparesis: Fighting for Change

08/27/26

Such a beautiful presentation of the issues #gastroparesis patients often encounter, with genuinely helpful potential solutions and a pathway toward improvements. Why has this approach not been adopted at every point of care?www.thehealthcareexecutive.net/health-observance-calendar/gastroparesis-awareness-month-2026/#CureGP #gpchangemakers
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Gastroparesis Awareness Month 2026 | Executive Brief

www.thehealthcareexecutive.net

Gastroparesis Awareness Month 2026: an executive guide to access, ownership, handoffs, practical measures, and a focused 90-day improvement plan.

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Gastroparesis: Fighting for Change

08/26/26

Reminder: Today!
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Gastroparesis: Fighting for Change

08/25/26

Reminder: Today!
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Gastroparesis: Fighting for Change
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08/25/26

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Gastroparesis: Fighting for Change
updated their status.

08/25/26

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Gastroparesis: Fighting for Change

08/24/26

Right after diagnosis, I remember being in so much pain and agony that I thought I would die. And I mean that. I truly thought I would not make it. But over time, when experiencing the nearly constant nausea and pain, I began to tell myself, actually say out loud, "It is just pain. It will pass. You will not die." It calmed me and allowed me to get through the worst moments. No one saw this. No one sees it now because I am a master of disguise, playing the part of a "normal" person. But the thing is, the pain and nausea are still there, and I must still endure them every single time they hit. They have not lessened, and they are no more welcome now than at first. I have not "overcome" anything. Do not think for a moment that this is not serious just because I do not moan and cry constantly. It never gets easier, never.This is what it is like for the #Gastroparesis community. We find ways to cope because we have little choice. We are stuck with no cure and no consistently safe and effective symptom control. In fact, we get so good at managing and hiding that people nearly forget we are sick or question whether we truly have this illness. But coping only masks what we feel for a time; it does not take away our illness or our very real symptoms.I started advocating for a reason, and that reason was not to teach coping skills.Why are we still focused on coping? I don’t want us to have to cope; I want us to be cured. We should not have to endure the effects of this illness or the dismissal of the medical world and policymakers who seem to think it is no big deal. I have no desire to convince people that they can live happily with this illness. I want to change the system. I want research and research funding, better physician education, and real solutions for patients. I want the FDA to step up its game and give us access to medications that might help alleviate our symptoms. I want solutions. I want cures.Where is the focus on that?#CureGP #GPChangemakers
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