How to Be an IC Advocate


What is an IC Advocate?

The definition of an advocate is simple: an advocate is someone who actively supports a cause, policy, or idea. An interstitial cystitis (IC) advocate speaks on behalf of themselves or someone else and helps to educate the community and policy makers on an issues that are important to IC patients.

Who can be an Advocate?

Anyone can be an advocate and help raise awareness about IC bladder pain, frequency and urgency. You don’t have to be an expert in governmental affairs or be present in Washington, DC to make your voice heard. From writing a letter to your Congressperson to tell them your IC story to encouraging your friends on social networking sites (like Facebook and Twitter) to learn more about IC, there are so many ways to be an IC advocate. Below is a list of a variety of ways for you to get involved and advocate for IC. Most take less than 5 minutes to do and every little bit helps!

Ways to Advocate for IC Patients

Write Your Congressperson

Help to secure federally funded IC research by sending letters to your congressional representatives in the US Congress. Let them know your story and how important dedicated IC research is to you. Find your congressional representative. Use this sample letter or write your own. Whenever possible it's a good idea to personalize the letter with information about how IC has affected you. You can also include information about the number of IC patients who live in your state. Send a copy of your letter to icamail@ichelp.org if you want to share it with the ICA.

Blog About IC

Whether you use Blogger, Wordpress, or another blogging tool, write a post about IC, get the word out about how prevalent it is, and how significantly it impacts people with IC. Be sure to refer people back to the ICA website for more information! To have your blog included on our list of IC blogs, email the URL to icamail@ichelp.org.

Post and Tweet For IC Awareness

If you are a member of Facebook, Twitter, Tumblr, LinkedIn, Buzz, Foursquare, or any other type of social networking community, use that membership to let the world know about IC. Post news articles or research updates on your status, or simply encourage your online friends to visit the ICA website (www.ichelp.org) to learn more about IC.

Help Other Patients Find Top IC Doctors

Do you know of a healthcare provider in your area who does a good job treating IC patients?  Please let us know about them by emailing ICAmail@ichelp.org.  We will contact the healthcare providers and talk with them about being included in the ICA Healthcare Provider Registry.


ICA Quick Polls - Your Participation Counts

Every little bit of research helps in securing more funding for IC research and advocacy and the ICA Quick Polls are no exception.  Just by participating in the ICA Quick Poll each month, you are adding to the current body of IC research and helping to make the case for the need for future research funding dollars. Take this month's ICA Quick Poll.

Wear a Ribbon for IC

Did you know that blue is the color of IC? You can help spread the word about IC by attaching a blue ribbon to your car antenna, clothing, or handbag. When people ask what the blue ribbon is for, you can tell them about IC and encourage them to spread the word about this disease themselves!

Help Researchers Find New Treatments

Clinical trials are research studies that help healthcare providers and researchers test the effectiveness of potential new treatments. By participating in a clinical trial, you are leaving a legacy ! Learn about trials that are currently recruiting.

 

Updated September 25, 2010