2021 Advocacy Education Program

2021 Virtual Advocacy Event
Sunday, March 21st, 2021

Session ONE: Finding Help Through Support Groups on Facebook

Many people have a difficult time finding a Facebook support group that best suits their needs. View this session to learn more about what to look for in a Facebook support group to help narrow down your search. You will hear from a few disease-specific support groups. Although we do not specifically endorse these groups, they are examples of what a positive and helpful support group can look like. We hope these interviews will highlight the unique benefits of support that can be found on social media.

Austin Chiang

Best Practices for finding a Facebook Support Group

Austin L Chiang MD, MPH
President
Association for Healthcare Social Media

www.ahsm.org
Social Media: @AustinChiangMD

Melissa Adams VanHouten

Gastroparesis: Fighting for Change

Melissa Adams VanHouten
Founder
Gastroparesis: Fighting for Change

www.curegp.org
www.facebook.com/GastroparesisFighting4Change

IBS Support

IBS Support

Nina Pan
IBS Support Administrator
IBS Support

Patient Advisory Committee Member
IFFGD
www.facebook.com/IBSsupport

SMAS

Superior Mesenteric Artery Syndrome Research Awareness and Support

Tara Williams
President, Co-founder
SMAS Research Awareness and Support

Staci Gruber
Co-founder
SMAS Research Awareness and Support

www.smassyndrome.org, and www.facebook.com/smasras

Session TWO: In-person and Online Support Groups

Now more than ever, it may be hard to locate support groups because in-person meetings are being transitioned to virtual platforms. View this session to learn about organizations that provide both in-person and online support groups for various GI conditions. These interviews take place with leaders of various disease-specific support groups. Although we do not specifically endorse these groups, they are examples of what a positive and helpful support group can look like. Each discussion will educate viewers on the organization while highlighting the unique benefits that in-person and online support groups can provide for the community.

SF OTF HPN Support

South Florida Ostomy and Tube Feeding/HPN Support Group

Lynn Wolfsen
President
South Florida Ostomy and Tube Feeding/HPN Support Group

Weston Florida Ostomy Association

Alison Reid

IBS Network

Alison Reid
Chief Executive Officer
IBS Network

https://www.theibsnetwork.org/support-groups/

Maryangela

Association of Gastrointestinal Motility Disorders

Maryangela DeGrazia-DiTucci
President and Founder
Association of Gastrointestinal Motility Disorders

www.AGMDhope.org
info@GImotility-AGMD.org

CVSA

Cyclic Vomiting Syndrome Association

Debbie Conklyn
Program Director
Cyclic Vomiting Syndrome Association

www.cvsaonline.org
cvsa@cvsaonline.org

Session THREE: Developing a Comprehensive Support System

Building a well-rounded support system is important to ensure the best quality of care for all GI patients. These video discussions educate viewers on types of support that are not always thought of. Hear from organizations that both provide resources and help to further connect patients to needed resources. For those who need to travel for appointments or scheduled procedures, learn about an organization that helps to offset financial burdens by providing free or discounted air travel. Those who are limited by dietary restrictions may benefit from hearing more from an organization that provides gluten-free food pantries. While developing a comprehensive support system, you can benefit from learning about an organization that encourages patients to take part in integrative medicine. Also included in this session is more information on the many resources IFFGD has made available to the GI community.

ACA

Air Care Alliance

Kristina Luke
Executive Director
Air Care Alliance

info@aircarealliance.org
www.aircarealliance.org

Carla Carter

National Celiac Association

Carla Carter, OTR/L
Director of Outreach and Programming
National Celiac Association

www.nationalceliac.org
carla@nationalceliac.org

Chey and Gaulin

Integrative Care with GI OnDemand and Gastro Girl

Jacqueline Gaulin
Founder, Chief Strategy Officer
GI OnDemand, and Gastro Girl

William D. Chey, MD
Director, Nutrition and Behavioral Health Services
GI OnDemand, and Gastro Girl

www.gastrogirl.com
www.GIonDemand.com

Session FOUR: Advocacy Education

View this session to learn more about the importance of your advocacy efforts. Those who are new to advocacy as well as those who have years of experience will benefit from this education program. Viewers learn more about Congress and how it works, how to contact and follow-up with Congress, as well as IFFGD’s legislative priorities for the GI community. The recorded live-stream of this session ends with a question and answer segment with IFFGD President, Ceciel Rooker, and IFFGD Washington Representative, Philip Goglas II.

Supplemental Advocacy Materials

The following materials are beneficial for advocates to reference during calls with Congress. Please attach the 2021 Legislative Agenda, if you are able, to any emails you send to Congress. If you have any questions or issues downloading or sending these documents, please email advocacy@iffgd.org.

Goglas 5

How Congress Works

Philip Goglas II
Washington Representative
IFFGD

Goglas 2 1

Advocacy and Why it Matters

Marissa Lombardi
Program Coordinator
IFFGD

Goglas 4

How to Contact Congressional Offices

Philip Goglas II
Washington Representative
IFFGD

Goglas 3 1

2021 Legislative Priorities at IFFGD

Ceciel Rooker
President
IFFGD

Follow Up

How to Follow-up with Congress

Philip Goglas II
Washington Representative
IFFGD

Session FIVE: Governmental Support

Government agencies provide support in a variety of ways. The first video educates viewers about a youth program from the National Institute of Digestive and Kidney Diseases (NIDDK) that seeks to engage minority students who may otherwise have difficulty entering the research field. This program engages students in high school, undergraduate, and graduate levels and enables them to become involved in science and research.

Travel can be especially difficult for those impacted by chronic GI conditions. The Transportation Security Administration (TSA) educates viewers on the support they provide for patients during travel. This session helps you to learn more about the steps you can take to have the best possible travel experience, especially for those with specialized medical equipment.

It is important for Veterans to be aware of the resources made available to them by the United States Department of Veteran’s Affairs (VA). Viewers can learn about research that is being conducted to better understand the high rate of GI conditions in Veterans and to improve treatment options. Gulf War Illness and other GI conditions that commonly impact Veterans are also discussed in this session. For those who feel they are impacted by these conditions, information is provided on what resources are available and how to utilize them.

Dr Agadoa

NIDDK Step Up Diversity Training Programs for the Youth

Lawrence Agodoa, M.D., FACP
Director
Office of Minority Health Research Coordination
National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)

TSA McMahon

Transportation Security Administration (TSA)

David McMahon
Federal Security Director

Brenda Grant
Officer
Transportation Security Administration (TSA)

VA

U.S. Department of Veterans Affairs

Karen Block, PhD
Gulf War Veterans’ Illness

Arun Sharma, PhD
Gastroenterology
U.S. Department of Veterans Affairs

Mark Riddle

Gastrointestinal Disorders and the Military Service Member: What You Need to Know

Mark Riddle MD, DrPH
University of Nevada Reno School of Medicine
VA Sierra Nevada Health Care System

IFFGD gratefully acknowledges support from Takeda Pharmaceuticals for this advocacy initiative.