Each September patients unite around the world to raise awareness for interstitial cystitis and chronic pelvic pain. This is an exciting time because we now believe that there are distinct subgroups to IC which would explain why many treatments haven’t worked for patients. We’ve got to get the word out so that physicians are aware of the latest information. Here’s how you can help!
#1 – Spread our IC Daily Fact through social networking
Write a few sentences or even a story about the campaign for your blog, Facebook, Twitter, Pinterest or in “what’s on your mind statement.” Every day in September, share our IC Daily Fact from our website!
#2 – Share your story
We’d like to hear about your success stories and/or struggles. Is your doctor knowledgeable about IC? How long did it take to be diagnosed? Are you responding to treatments? How has IC changed your life? Are you hopeful or frustrated?? Tell your story right now in the ICN Support Forum (must use Facebook to log in or register to post in the forum), on our IC Awareness Month Facebook page. Or, you can email it to us at: patient firstname.lastname@example.org
#3 – Participate in our contests
#4 – Get politically active
Encourage your local, regional and national politicians to pass a proclamation to honor IC Awareness Month. To make this easy for you, use the letter we’ve placed on the campaign website.
#5 – Send out our press release
Send our press release to your local and regional paper, asking if they would do a story about IC and IC Awareness Month. The press love personal, local stories. Share a few paragraphs about your life with IC in your community, as well as any obstacles you have faced with finding doctors, getting pain care and/or the public perception of bladder diseases.
#6 – Educate your doctors
Bring IC Awareness materials and our educational materials to each of your physicians and nursing staff to place in their offices and waiting rooms. Share the latest IC articles with your physicians.
#7 – Make a donation
Make a donation directly to an IC research center. We support Beaumont Hospital in Royal Oak Michigan for their cutting edge IC studies.
#8 – Mobilize your support group
If you’re in a support group, ask them to participate in IC Awareness Month. They should have a meeting in September and, if possible, send out our press release. You could do an activity, a bake sale, garage sale to raise money for research. You could organize a walk for awareness or approach a local TV station and ask for a story on IC. The sky is the limit. Dare to be bold! If there is no support group in your area, consider starting a new group to provide support and build friendships among patients who often feel very isolated and alone.