You Are Here: ICN : ECRC : Patient Activism

Just as in the IC movement, eosinophilic cystitis patients must unite to campaign for research funds, better medical care and to create patient support opportunities. It begins with you and others. There are several ways that you can be involved.

• HELP US - If you'd like to be part of a team trying to make a difference, we can use volunteers to help organize our efforts, from moderating our EC message boards, to serving on an EC committee to help us organize future activities. If you're interested, please email: jill@ic-network.com
  
  
• DEMAND FEDERAL FUNDING - 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. These letters have power. Write to your senators and congressmen asking for them to support EC research. Share the depth of your frustration, your fear and frustration about the lack of effective treatments. Demand research. The NIDDK fundsthe great majority of federal urology research. Ask your representative to request that the NIDDK add EC to their research budget line items.
  
  
• DONATIONS FOR RESEARCH - Make a donation to the NIDDK Gift fund specifically for EC research.
  
  
• RECRUITING RESEARCHERS - Ask your local universities and college urology departments if they would be willing to get involved in EC research. Take your pitch directly to them. The University of Utah is one of the few in the USA actively studying EC.
  
  
• NEWSPAPERS & 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 EC. 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 EC.

  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!

Revised: May 15, 2002