The Interstitial Cystitis Association (ICA) Advocacy Month is a virtual event in 2021. Meetings, emails, and phone calls are taking place from June 1st through June 11th. We invite the entire IC/BPS community to unite and advocate for our shared critical needs and deliver important personal messages to Members of Congress. With a new Congress in place, we need your help to educate them about IC/BPS and how it impacts your life! The greater the participation, the greater the impact. We need YOU and your family and friends to broaden our reach and make this year’s Advocacy Month the most successful yet!

Participation can be done in 3 easy steps that will only take a few short minutes of your time:

  1. Find the contact information for your two Senators and your Member of the House of Representatives (conduct a search using the Find Your Representative zip code search box in the upper right corner).
  2. Download the email sample and send it to them or you can use the phone script and give them a call.
  3. Fill out this feedback form and let us know that you participated!

Key priorities of the IC/BPS community are supported by both Republicans and Democrats. We are not asking anyone to take any health policy position, rather to support our key bi-partisan priorities.

Want to do or learn more? See more below!

Watch the ICA Virtual Advocacy Day Videos

How Congress Works

In this video ICA’s Washington Representative and ICA Board Members discuss the structures of government and why IC research and awareness are so important for the IC community.

Featuring: Philip Goglas, II, ICA’s Washington Representative; Barbara Zarnikow, former ICA Board Co-Chair and IC patient; Eric Zarnikow, ICA Board Member and IC caregiver; Claudia King, ICA Board Member and IC patient

IC Advocacy and Why It Matters

Listen to ICA Board Members talk about what it means to be an IC advocate and how passionate they are about advocating for IC patients. They also discuss educating members of Congress about IC.

Featuring: Philip Goglas, II, ICA’s Washington Representative; Barbara Zarnikow, former ICA Board Co-Chair and IC patient; Eric Zarnikow ICA Board Member and IC caregiver, ICA Board Member; Claudia King, ICA Board Member and IC patient; Dr. Robert Moldwin, ICA Board Member and Medical Advisory Board Member

How Federal Agencies Support IC Research

Listen to this video to learn how the IC community has benefited from IC research; learn what the Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP)is; and how funding from the Centers for Disease Control & Prevention (CDC) helps raise IC awareness.

Featuring: Philip Goglas, II, ICA’s Washington Representative; Barbara Zarnikow, former ICA Board Co-Chair and IC patient; Dr. Robert Moldwin, ICA Board Member and Medical Advisory Board Member

The Importance of Telling Your Personal IC Story and Samples

Telling your personal story is one of the most important parts of a congressional meeting! Listen to ICA Board Members discuss why. You will also hear their personal stories that they will be sharing with congressional staffers in June.

Featuring: Barbara Zarnikow, former ICA Board Co-Chair and IC patient; Eric Zarnikow, ICA Board Member and IC caregiver; Claudia King, ICA Board Member and IC patient

How to Contact Congressional Offices

Philip Goglas, II discusses how to find and contact your congressional offices.

Featuring: Philip Goglas, II, ICA’s Washington Representative

How to Follow Up with Congress

It’s important to follow up with your representatives after you contact or meet with them. In this video, Phillp Goglas, II will tell you the best way to do this.

Featuring: Philip Goglas, II, ICA’s Washington Representative

2021 Funding Priorities and Background Detail for Reference

Need help? Email us at advocacy@ichelp.org!

Revised Monday, May 24th, 2021