Interstitial Cystitis Network : Activists Corner : Find an Interstitial Cystitis Support Group, Start a Support Group, Television & Radio Campaigns & more! Get ACTIVE!

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Current USA & Canada Support Groups

Getting Active!

Make no doubt about it. The Interstitial Cystitis movement began with IC patients who got involved. Nearly every national group began with the work of one patient who had a dream and put their efforts into fulfilling that dream to reach other patients in need.

Annette & Anthony Walker founded UKICSG & COB Foundation to honor her sister with IC
Lesley Morrison founded the Bladder Pain Society in the United Kingdom
Florentina Ferreyra founded ACI-Mexico
Matsako Katsurada founded Tomo No Ki - Japan
Dot Milne founded the New Zealand Urology Support Group
Sandy McNicol founded the British Columbia IC Association & Canada IC Society
Julia Godoy founded the Norwegian IC group
Barbara Muendner Hensen founded the German ICA
Elke Hufnagl founded the Austrian ICA
IC patients in San Diego founded the original ICA - US
and Jill Osborne founded the IC Network

The list goes on and on. They are no different than you. They developed interstitial cystitis at various ages. They struggled with medical care. They agonized over friendships lost and family relationships strained. Most of all, they were determined not to give up. Instead of suffering in silence at home alone, these patients poured their energy into making a difference. You can to! Margaret Mead once said "Never doubt the power of a small group of committed people to change the world." There is no better example than the IC community.

Although interstitial cystitis advocacy has come far in the past thirteen years, there is STILL much work to be done. We need patients, today, to be actively involved in the IC effort. Your job is to be an ambassador for the interstitial cystitis patients in your local communities, including: working the media to do stories on interstitial cystitis, starting support groups and, of course, political action. Here are a few ways that you, the IC patient, can become involved:

Start A Support Group

With the dissolution of both ICA-US and Canada ICS support groups in 2001, the need for support groups has become urgent throughout North America. While some groups have continued independently, many others have stopped their live saving activities. We hope to encourage you to start a support group by offering the following resources.

Guide to Starting an IC Support Group (Newly Revised)
ICA-US Transition Instruction Sheet - for former ICA groups who are considering becoming independent.

If, after reviewing these, you are seriously considering starting one, we would be happy help you by promoting your group, referring IC patients, sending you a donation of books for your resource library, helping you with fund raising ideas, and much more. Just send your email to: jill@ic-network.com.

Did you know? That media outlets are afraid to do stories on the "bladder." Patients can suffer for years because they are too embarrassed to mention their symptoms to a doctor? Children with bladder diseases are being denied access to restrooms at school because schools aren't aware that kids can have bladder diseases. Many patients are still unaware that there is a name for their symptoms and possible treatments.Please help us to spread the word about IC! Get involved today!

Television:
In the past five years, ICN users have participated in letter writing campaigns to Sixty Minutes, Oprah, Dateline, Montel, Leeza, CBS Health Watch, MSNBC, CNN Health and others. We haven't been successful yet, but that doesn't mean that one of you might write that one powerful letter that convinces Oprah to do that story. To find the names and addresses of various shows, just search for their web sites. They are all on-line now and easy to access.

Radio:
You'll often find ICN Mgr Jill on the phone to radio talk shows throughout California calling in to comment on disability issues, pain management or women's health care. Radio talk shows, like the national Dr. Dean Edell's HealthCentral, or local radio personalities are often great resources for IC patients. If you have a favorite radio personality, call the station and ask for their producers name. A short letter asking that they do health topics can be very successful. Sample topics include: Health Care Rights, Pain Management, Women's Health, Men's Health and, of course, Interstitial Cystitis.

Newspapers & Popular Magazines:
Often, the best way to gain visibility is to approach your local paper. This will accomplish your most important goal, to educate your community (schools, physicians, associations, friends & colleagues) about IC. A quick and courteous phone call to their newsroom requesting the name of the health, women's, or computer editor is all that you need to send a quick letter and ask if they will do a story on IC.

If you're thinking big or are a freelance writer, you can also send query letters to national magazines (and possibly get paid for your story). Marie Grimes, an IC patient in California, wrote a brief letter to Reader's Digest which resulted in a story on IC within a year. Your first stop should be a search of the web for your magazine's web site. Usually, you'll find a list of contact writers or editors for their magazine, along with their submission guidelines. You can also do a search for editor names using the national media guides found at every library reference desk. Don't forget Dear Abby and Ann Landers too!

Political Action:
If every IC patient wrote just one letter a year to their congressperson or senator, urology diseases would have much greater advocacy and research funding. Those letter have power. Traditionally, you'll have two major political writing campaigns related to IC research funding. We'll also have occasional writing campaigns on urgent and timely topics, such as late 1999's three pending Pain Management Bills in Congress.

IC Fundraising
The ICN encourages donations to the NIDDK, the United Kingdom IC Support Group, Netherlands ICSG, Canada's Interstitial Cystitis Society and the New Zealand Urology Support Group. We encourage USA patients to donate directly to the National Institutes of Health, which allocates the greatest majority of funds for IC research in the country. Your donor dollar can be allocated for specific types of IC research. For more information, please visit the NIDDK Gift Fund.

Internet Advocacy
The internet and web now offers the largest collection of medical related information in the world. Every day, new patients are looking for resources and support. One way that you can help is to check IC listings on other health web sites and ask if they would like an IC story. All of the big web sites are looking for new resources. For example, About.Com did a large story on IC in 1999. If you find any sites interested, please forward the information to ICNMgrJill.

Story Suggestions:

Tell your personal story and how your life has been changed because of IC.
You could talk about new treatments, or how your life has been improved through treatments and patient support.
You could also identify a specific need in your community, such as your difficulty in finding a doctor who believed you.
One effective strategy is to request a story on the five most misdiagnosed diseases in women.
Internet stories are popular. A story on how the web has improved your access to medical information could fly with a technical or internet editor.
Offer a list of resources on the web for editors to research.
For television or radio, please give Jill's name as a contact. She'll be happy to appear or phone in to shows.

Don't forget to list the ICN as a resource. We'll help you develop materials, proof stories and serve as an informational and interview resource for any media outlet. If you have any questions, please contact ICNMgrJill at: jill@ic-network.com

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