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How to Make our Voice Heard

https://www.iffgd.org/ “Make Your Voice Heard!”

A guided suggestion for helping us to engage with our congressional representatives.

You are invited to join the thousands of patients and their families, nurses and physicians, researchers, and members of the public working to raise critical awareness for all those suffering with a chronic digestive disorder by asking your Members of Congress to cosponsor The Functional Gastrointestinal and Motility Disorders Research Enhancement Act, a piece of budget-neutral legislation that seeks to advance  scientific understanding of these conditions by encouraging and bolstering research. Read more about the bill here.

IFFGD has been a voice on Capitol Hill for years on behalf of the digestive health community. Despite the progress we have made, federal funding for functional GI and motility disorder medical research remains inadequate. Patients often face issues regarding diagnosis, access to care, and availability of treatment options.

As we continue to raise awareness of the effects of these debilitating disorders of people’s lives, we are reminded of what it means to be an advocate – someone who speaks out and works with others to create meaningful, positive change.

You can help fill the information gap in Washington, DC by becoming an advocate for digestive health. Working together we carry a clear, impactful message. Adding your voice to a growing chorus will help expand critical research, initiate important legislation, and facilitate the development of new treatment options.

The following tips and tools are intended to assist with your advocacy efforts. But the strength of an advocate does not come from an expertise in civics, public policy, or the legislative process. Advocates are simply patients, family members, and friends, and our strength comes from a willingness to stand up and speak out!

Contact Your Members of Congress

You can contact your Congressperson by phone, email, or through social media. The first step is to identify and find the contact information for your Representative by going to www.house.gov and entering your zip code in the box at the top right corner.

BY PHONE

1. Identify yourself as a constituent and ask to speak with the healthcare staff member for your Representative. If they are unavailable, you can leave a voicemail.

2. Ask that your Member of Congress introduce The Functional Gastrointestinal and Motility Disorders Research Enhancement Act.

3. Provide a short explanation of functional GI and motility disorders. Refer to the Quick Facts below for help.

4. Briefly share your personal story of how one or more of these disorders has affected your life, or the life of someone you know.

5. Explain that the bill will significantly improve our scientific understanding of the functional GI and motility disorders and improve diagnosis and treatment.

6. Thank the staff member for their time and attention.

Give the aide your contact information and ask to be informed about the actions of your Representative on this key issue.

BY EMAIL

1. Fill out the provided contact form with your contact information or, if a contact form is not provided, include your mailing address in your email to identify yourself as a constituent.

2. Follow steps 2 through 6 above.

3. If desired, use this Sample Letter to help you format your letter to your Representative.

BY TWITTER

1. Find your Representative’s Twitter handle with this list from C-SPAN: www.twitter.com/cspan/lists/members-of-congress 

2. Identify yourself as a constituent.

3. Ask your Representative to introduce the bill.

Quick Facts

1. The Functional Gastrointestinal and Motility Disorders Research Enhancement Act is budget-neutral: it does not require additional costs to implement.

2. Functional GI and motility disorders affect 1 in 4 people in the US – men, women, and children.

3. The conditions are a serious issue for many military veterans – part of Chronic Multisymptom Illness (or Gulf War Syndrome).

4. The conditions involve improper functioning of the nerves, muscles, and related mechanisms of the digestive tract.

5. They are chronic and some can be life-threatening.

6. These conditions are often misdiagnosed or mistreated.

7. Currently, treatment options are extremely limited, not always effective, and focus on symptom management – no cures are known to exist.

After You Contact Your Congressperson

Finally, to help with tracking our progress, we’d appreciate it if you would send us an email at IFFGD to let us know that you contacted your Member of Congress, and let us know the name of your Representative. (We will keep your name and contact information confidential.) Our goal is to continue to work with policy makers to advance this critical legislation in Congress on behalf of the digestive health community.

Then, spread the word! Numbers are volume, and the louder the conversation, the more attention it will receive. Talk to your friends, family, neighbors, and coworkers about your actions and ask them to join you.

Thank you.