Virtual Advocacy Day: September 26th, 2018
In preparation for National Advocacy Day 2018, we collected letters and pictures from advocates and their family members and friends throughout the month of September. These letters shared the challenges posed by life with a chronic GI disorder and the perspectives of those affected, demonstrating the critical need for greater research funding for treatments and cures through passage of HR 1187, the Functional GI and Motility Disorders Research Enhancement Act of 2017.
Then, on Wednesday, September 26th, as advocates across the nation reached out to their House Members of Congress to demand they take action, the more than 80 letters and pictures collected were hand-delivered to the Washington offices of legislators representing districts spanning the entire country.
In this way, we were able to maximize the impact of our message — that research needs to happen NOW!
We are grateful to the many advocates who added their voices to the growing chorus. Together, we can expand critical research, initiate important legislation, and facilitate the development of new treatment options and cures.
Miss out on Advocacy Day? It’s not too late to make your voice heard!
You can take action by following these simple steps:
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 or contact our Director of Advocacy at firstname.lastname@example.org.
- 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.
- Ask that your Member of Congress become a cosponsor of HR 1187, The Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2017.
- Provide a short explanation of functional GI and motility disorders. Refer to the Quick Facts below for help.
- Briefly share your personal story of how one of these disorders has affected your life, or the life of someone you know.
- Explain that HR 1187 will significantly improve our scientific understanding of the functional GI and motility disorders and improve diagnosis and treatment.
- 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.
- 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.
- Follow steps 2 through 6 above.
- If desired, use this sample letter to help you format your letter to your Representative.
- Find your Representative’s Twitter handle with this list from C-SPAN: www.twitter.com/cspan/lists/members-of-congress.
- Identify yourself as a constituent.
- Ask your Representative to cosponsor bill HR 1187.
- Use #HR1187 to join the conversation.
- HR 1187 is budget-neutral, it does not require additional costs to implement.
- Functional gastrointestinal and motility disorders affect 1 in 4 people in the US – men, women, and children.
- The conditions are a serious issue for many military veterans – part of Chronic Multisymptom Illness (or Gulf War Syndrome).
- The conditions involve improper functioning of the nerves, muscles, and related mechanisms of the digestive tract.
- They are chronic and some can be life-threatening.
- These conditions are often misdiagnosed or mistreated.
- Currently, treatment options are extremely limited, not always effective, and focus on symptom management – no cures are known.
Finally, to help with tracking our progress, we’d appreciate it if you would send us an email to let us know that you contacted your Member of Congress in support of HR 1187, 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.
Thank you for taking steps to create change for the digestive health community!