Copy of Advocacy Day 2020 1

 

Virtual Advocacy Event

 

View the Education Program

 

JULY 26-27, 2020

For the millions of Americans living with the debilitating and sometimes life-threatening symptoms of a functional gastrointestinal or motility disorder (FGIMD), the fight for awareness, research into safe and effective treatments, and cures are ongoing.

But Members of Congress can help

IFFGD's Virtual Advocacy Event was a two-day event educating and empowering advocates from across the nation — patients, family members and friends, and health care providers. This educational opportunity provided information on how; patients and caregivers can engage with Federal agencies to help shape research, drug development, and approval; to effectively share personal experiences; and educate key policymakers in Washington about the needs of the millions of Americans affected.

Together, we have, and will continue to, make the voice of the digestive health community heard and encourage Congress to prioritize actions that will lead to greater awareness and the development of new treatment options and cures. 

An online Advocacy Education Program was held on Sunday, July 26th. These videos will made made available online soon.

Monday, July 27th was a day dedicated to advocating Congress. If you were unable to contact your legislators on this day, you can still make your voice heard and contact Congress. Please refer to the Advocate Training Materials and email This email address is being protected from spambots. You need JavaScript enabled to view it. with any questions or comments.

 

 

 

 

About IFFGD's 2020 Virtual Advocacy Event

Whether you are living with an FGIMD or you know someone who is, you understand the true impact of these conditions on those affected and the need for greater research funding for treatments and cures. IFFGD's Virtual Advocacy Event provided participants with the opportunity to share this impact with elected officials and advocate virtually with others just like you. Please email This email address is being protected from spambots. You need JavaScript enabled to view it. if you have any questions relating to this event or future advocacy efforts.

Sunday, July 26th

This educational portion of the Advocacy event featured talks given by representatives of government agencies, healthcare professionals, and IFFGD staff. This full-day educational program will began at 9 a.m. EST and concluded at 5 pm., with scheduled breaks throughout the day. The speaker presentations from this program wil be made available online in the near future.

Educational Program Agenda

Session ONE: Update on research and drug development in Federal Agencies

Start time 9:00 AM

Overview of the National Institutes of Health
Carolynn Eiler; Event Project Manager, IFFGD
Overview of research in Neurogastroenterology Supported by the National Institutes of Health
Griffin Rodgers MD, MACP; Director, NIDDK, NIH
Overview of the US Food and Drug Administration
Emily Taylor; Executive Assistant to the President and Organization Administrator, IFFGD
FDA Patient Affairs Staff: Patients First! How FDA is Making Patients a Priority
Andrea-Furia Helms MPH; Director, Patient Affairs Staff, FDA
Lifecycle of a drug - Pricing and Paying
Hayley McCorkle; Public Relations Associate, IFFGD
Marketing of a Pharmaceutical Drug: A peek inside a creative advertising agency
Brittany Aliano; Patient Advisory Committee, IFFGD and Vice President, Ogilvy Health


Session TWO: Advocating for yourself in healthcare

Start time 11:00 AM

Preparing for your appointment: Going beyond symptoms to address your goals
Linda Nguyen MD; Clinical Associate Professor of Medicine, Stanford Health Care
How to prepare for seeing your doctor
Nitin K. Ahuja MD, MS; Assistant Professor of Clinical Medicine, University of Pennsylvania
What to ask your healthcare provider
Gregory Sayuk MD, MPH; Associate Professor of Medicine and Psychiatry, Washington University School of Medicine
The best ways to describe pain so your healthcare practitioner understands
Darren M. Brenner MD; Associate Professor of Medicine and Surgery, Northwestern University
A Look at Online Heath Records
Jamie DuMont; Director of Operations, IFFGD
Leveraging Live-Stream: Getting the Most from a GI Telehealth Appointment
Amol Sharma MD, MS; Associate Professor of Medicine, Augusta University

 

Session THREE: Creating a healthcare team

Start time 1:00 PM

How to create your healthcare team
Lorren Sandt; Co-Founder and Executive Director, Caring Ambassadors Program
Making your surgeon a part of your healthcare team
David Mercer MD, PhD; Professor of Surgery, University of Nebraska Medical Center
Making your dietitian a part of your healthcare team
Lauren Cornell, MS, RD; Registered Dietitian, Lauren Cornell Nutrition, Inc.
Making Mental Health part of your healthcare team
Claire Brandon MD; Whole Body Psychiatry and GI Psychiatry


Session FOUR: Going beyond traditional medicine in GI Illness

Start time 3:00 PM

Introduction to complementary alternative medicine (CAM) in gastrointestinal illness
Anthony J. Lembo MD; Professor of Medicine, Harvard Medical School
An Introduction to supplements for gastrointestinal disorders
Jordan Shapiro MD; Assistant Professor of Gastroenterology, Baylor College of Medicine
Supplements for IBS: What is the Evidence?
William D. Chey MD; Nostrant Collegiate Professor, Michigan Medicine
Introduction to acupuncture in gastrointestinal illness
Anthony J. Lembo MD; Professor of Medicine, Harvard Medical School
Introduction to behavior therapy in gastrointestinal illness
Anthony J. Lembo MD Professor of Medicine, Harvard Medical School
Introduction to exercise for your gastrointestinal health
Jennifer Shifferd, PT, CLT, WCS; Clinical Instructor, Michigan Medicine

 

Monday, July 27th

Thank you for joining us by emailing or calling your legislators! Educational videos and all necessary materials are provided to ensure you can make the most out of this day, and future days of advocating. If you were unable to participate during the event, you can still reference these materials and reach out to your legislators. 

Training Videos Include:

 

 

 

 

Frequently Asked Questions

Where do I go for questions?

  • Email This email address is being protected from spambots. You need JavaScript enabled to view it. before, during, or after the event.

How much does the event cost?

  • This is a free event!

Who can attend IFFGD’s 2020 Virtual Advocacy Event?

  • All are welcome to participate! Many people are impacted by gastrointestinal disorders and we invite everyone to attend.

How do I register for the event?

  • Registration is available here.

Is Sunday’s educational program being recorded?

  • Yes, all talks will be recorded.

Will the resources be available after the event, even without registration?

  • Yes! Educational videos from Sunday’s program will be made available on https://iffgd.org/ after the event.  Advocate training materials, including videos and informational packets, will be made available online. 

How do I access the virtual event?

  • You will receive a link to the event if you have registered. You can use your laptop, desktop, cell phones, tablets, or other devices as long as you have an internet connection. A link to the educational portion will also be made available on the Virtual Advocacy Event Page.

Will I be visible or heard by others during the event?

  • No, you will be watching the event as a viewer and will be muted at all times. There will be a chat box available for any questions or feedback during the event. As always, please email This email address is being protected from spambots. You need JavaScript enabled to view it. with any questions or comments.

Will my data or internet affect by viewing ability?

  • Poor internet connection or cellular service can affect the quality of your connection to the live-streamed educational event.

What device should I use during the educational program?

  • You can connect using a computer, laptop, tablet, cell phone, or any other device with an internet connection. For the best possible experience, we recommend:
    • For computers – You should be able to connect on any browser. Chrome provides the best quality experience
    • For mobile devices – Download the Vimeo app for the highest quality and to ensure the chat box is available.

How long will the event last?

  • This is a two-day event beginning with a full educational day on Sunday and an advocacy call-in day on Monday. The event begins Sunday morning at 9a.m. EST and will conclude late afternoon that day. Calling and emailing of Congressional Offices will occur on Monday at the convenience of each participant.

Do I have to be actively participating during both days of the event?

  • No, but we encourage you follow the full day education program on Sunday if time permits. If you are unable to follow along the videos will be made available afterwards on https://iffgd.org/.

Do I have to be participating at a specific time on Monday, July 27th?

  • No, you can call and email at your convenience throughout the day. We ask that you try your best to complete your legislative contacts during the action day Monday. For most Washington D.C. offices, the best time to call is from 10 a.m. to 4 p.m. EST.

How do I locate my legislators if I am not familiar with them?

  • Visit house.gov and senate.gov, instructions are provided in the participant packet beginning on page 10.

How do I know if my legislator has already supported the legislation?

  • A list of current cosponsors is available on page 5 of the participant packet.

How long should my legislative contacts be?

  • Phone calls to legislative offices should be 20-30 minutes long at most but can be shorter. Follow the script on page 8 to help guide your phone calls and emails.

What should I be sending to my legislators?

  • The IFFGD Legislative Packet and H.R. 3396 Bill Text PDF documents. They can be downloaded on the Advocate Training Materials page.

Where do I find the documents to send my legislators?

  • Both documents will be sent to registrants as a link via email and made available on the Advocacy Training Materials page.

I am having trouble attaching the packet to send to my legislator, what should I do?

  • Email This email address is being protected from spambots. You need JavaScript enabled to view it. and let us know the congressional office and email address you are trying to send it to, we will follow-up with that information for you.

What should I say for my call?

  • View the call and email script on page 8 of the participant packet to guide your contacts. Visit page 7 for guidelines and prompts to help you develop your story.

Should I follow-up with my legislator after the advocacy event?

  • Yes, you should follow-up with the office by phone or email within a few weeks of the event. Instructions on how to do so are available in an Advocate Training Video.

 

 

 

 

Legislative Successes

IFFGD has long been a voice on the Hill. By educating key policymakers and regulators in Washington, we have been able to bolster National awareness and elevate the research portfolios for FGIMDs at the National Institutes of Health (NIH) and other Federally-funded research institutions.  

Learn more about our legislative successes. 

 

We thank you for your participation in Advocacy Day 2020 and look forward to future Advocacy Events!

 

 

 

 

Advocate for Change

capital hill day 2

What it means to be an advocate – someone who speaks out and works with others to create meaningful, positive change. Let your voice be heard.

Taking Action for Digestive Health

The Functional GI and Motility Disorders Research Enhancement Act

Make Your Voice Heard