REMINDER: TODAY AT 11:30 AM ET! PLEASE JOIN US!
The Association of Gastrointestinal Motility Disorders (AGMD) will be hosting an open discussion on Coping with Holiday Pressures & Expectations on Monday, November 18, 2019, at 11:30 AM ET.
The holiday season can be one of the most physically, socially, emotionally, and financially challenging times of year for those living with digestive disorders. Please join us as we discuss how to cope with the pressures and expectations associated with the holidays.
This meeting is free, but you must pre-register at the following link: conta.cc/2BR5437
Once you have registered, you will receive an e-mail with call-in instructions. You can join via telephone or web. … See MoreSee Less
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Renae M. Briones
Posted 11/17/19
Before I connect with Oley Exchange, just wanted to see if anyone local needs either Kate Farms Peptide 1.5 or Vivonex formula? I have some extra cases of each… (I’m in Milwaukee). 🙂 … See MoreSee Less
PARTICIPATION OPPORTUNITY: LISTENING SESSION FOR GASTROPARESIS PATIENTS OFFERED BY THE FDA AND NORD:
"This Listening Session will be co-hosted by FDA’s Patient Affairs Staff and the National Organization for Rare Disorders (NORD) and will provide patients affected by gastroparesis with an opportunity to share their experiences of living with and managing this disease directly with the FDA. This teleconference will involve only FDA staff, NORD staff, and a limited number of patients in the gastroparesis community.
What: a Listening Session (teleconference) with gastroparesis patients
When: Monday, December 2, 2019, from 1-2:30 pm ET
Who: Adult patients 1) with idiopathic gastroparesis, or 2) who have both gastroparesis and diabetes. Please note that there are a very limited number of openings for participating in the session.
Why: To help FDA staff members better understand the burden of living with this disease, the needs and concerns of patients, and the patient perspective with respect to current or future treatment options.
How: To indicate your interest in participating, please complete this survey before November 21, 2019: www.surveymonkey.com/r/NORDGastroparesis. FDA hopes to gain a diversity of patient experiences and perspectives, therefore participants will be selected by an internal FDA Division on the basis of responses to this survey.
If you are selected to participate in this Listening Session, you will be notified on or around November 25, 2019. Patients on this teleconference will be identified only by their first name (or pseudonym). Prior to the call, the FDA will share examples of the types of questions that may be asked during the listening session with the selected participants.
FDA Listening Sessions are small, informal, non-public, non-regulatory, non-binding meetings. FDA will not discuss policy or guidance. Following the Listening Session, FDA will post a meeting summary on its website. While the names of participants will not be included in the summary, the information they provide to the review staff might be included. To learn more about FDA’s Listening Sessions, and see examples of recent sessions, please click here: www.fda.gov/patients/learn-about-fda-patient-engagement/patient-listening-sessions.
This is an exciting opportunity for the voice of gastroparesis patients to be heard at the FDA. We hope you will be able to participate. If you have questions about this Listening Session, please contact FDA’s Patient Affairs Staff at PatientAffairs@fda.gov." … See MoreSee Less
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We have decided to launch one more sales campaign just before the holidays for those who expressed interest in this.
We have available a long-sleeved shirt (with front and back print) at www.customink.com/fundraising/gastroparesis-fighting-for-change-long-sleeve-shirt. The price is $19 plus shipping, and we need a minimum of 30 orders for them to print and ship.
We are also offering our tote bag one final time at www.customink.com/fundraising/gpffc-tote-2. The price is $15 plus shipping, and we need a minimum of 17 orders for them to print and ship.
Both campaigns end on November 29, 2019, and are scheduled to arrive by December 17, 2019. (If the order minimums are not met, the company will issue a refund, but we are hoping we will meet the minimums.)
Thank you all for your purchases and shares! We greatly appreciate your support! … See MoreSee Less
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Melissa Dixon
Posted 11/15/19
I hate how sleeping pills dont work because of this. Its 1am still havent slept and I am on night number 3 like this … See MoreSee Less
Today is the Digestive Disease National Coalition (DDNC) Step Therapy National Day of Advocacy! Encourage your federal legislators to support the #SafeStepAct by asking them to cosponsor #S2546 & #HR2279: curegp.org/hr2279/! #Gastroparesis #CureGP … See MoreSee Less
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Many thanks to Rep. Lisa Blunt Rochester (D-DE) for cosponsoring our bill!
You can help too! Please support #HR3396, the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2019, which would expand research and promote awareness and understanding of devastating functional gastrointestinal and motility disorders which greatly impact the lives of millions!
We have made it easy for you to share your story and ask your legislators for support. Simply scroll to the bottom of the page and complete the form at this link: curegp.org/hr3396/. We will make sure your legislators receive your letters!
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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 www.congress.gov/bill/116th-congress/house-bill/3396 or www.govtrack.us/congress/bills/116/hr3396.
THANK YOU SO MUCH! … See MoreSee Less
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