Sponsored and hosted IC Regional Forums in Houston, Boston, and Long Island, including a video production of The Long Island Regional Forum, which will be an excellent patient resource.
Created and published our first book, IC & Pain: Taking Control, the first and only book on pain management for people with IC.
Wrote and published our first-ever booklet for loved ones of people with IC entitled, Because You Care: information about interstitial cystitis for family and friends of people with IC.
Continued to develop and publish our ICA Pocket Guide Series, including:
1. IC: Expert Opinions, volume I, a Q & A format with five ICA Medical Advisory Board members.
2. IC Treatments & Medications Guide
3. A to Z – A Glossary of IC Terms.
4. IC: Expert Opinions, Volume II, which will be ready for distribution in January 2005.
We helped thousands of new and current patients by expanding our patient services this year…
-IC Question Corner, -ICA Website (www.ichelp.org), -Café ICA (the ICA’s online monthly news digest), -ICA Update, -our Toll-Free help line, -our ICA National Patient Support Advocates, -the ICA Physician Registry, and -IC Connections.
As a founding member of the Multinational Interstitial Cystitis Association (MICA – www.multinationalica.org), the ICA helped to organize and host MICA’s Inaugural Meeting, which was held this fall in Rome, Italy. ICA President and Founder, Vicki Ratner, MD, was co-chair of this very successful international conference and presented a lecture on IC and pain. Proceedings from this meeting will be published in a supplement to the International Urogynecology Journal.
The ICA continues to educate the entire medical community about IC, including urologists, urogynecologists, physical therapists, urologic nurses, Ob-Gyns, pain management specialists, psychologists, and many other healthcare professionals.
- Through guest lectures at professional meetings, participation in workshops, our Physician Registry Program, ICA Medical Education Packets, and direct participation in medical education conferences, we educated more healthcare providers than ever before about the diagnosis and treatment of IC patients.
- Additionally, we provided the most up-to-date information for healthcare providers through ICA Professional Perspectives, our quarterly publication for healthcare providers.
This year alone our outreach efforts include direct participation at the following medical education conferences:
- The American Urological Association Annual Meeting
- The Society for Urologic Nurses Association Annual Meeting and 1st Annual Pelvic Pain Conference
- The Simon Foundation Conference on Stigma in Healthcare
- The International Pelvic Pain Society Conference
- The Partners for Understanding Pain Conference
- The American Academy of Pain Medicine 20th Annual Meeting
- The International Urogynecological Association 29th Annual Meeting
- Annual Meeting of the International Continence Society
- The American Association of Office Nurses Annual Meeting
Research 2004
This year, we had a research breakthrough! The structure of the protein, antiproliferative factor (APF), was fully identified and appears to be found only in people with IC and not other bladder disorders. This latest APF research finding was published in the August 10 edition of the Proceedings of the National Academy of Science and further research on APF may lead to a specific diagnostic test and better treatments for IC. The ICA’s own Pilot Research Program and the Fishbein Family IC Research Foundation were catalysts in this breakthrough; our funding helped to get this work off of the ground
The ICA’s own Pilot Research Program developed and funded two very important studies in conjunction with the University of Chicago’s National Organization for Research (NORC). These studies will further our understanding of IC and its possible causes.
Because of your support over the past two decades, we have been able to fund and direct over $2.5 million in IC-specific research through our own ICA Pilot Research Program and the Fishbein Family IC Research Foundation.
Since the ICA’s founding in 1984, our advocacy efforts have been directly responsible for allocation by Congress of nearly $100 million in funding to the NIH for IC research!
- We continue to work directly with Congress, the NIH, and the Centers for Disease Control (CDC) to ensure continued IC research funding at the federal level and to encourage public awareness campaigns for IC.
- ICA President and Founder, Dr. Vicki Ratner, serves on several government committees to ensure that IC has a "voice" in Washington, DC.
The ICA gave presentations at the first-ever Pelvic Pain Briefing held on Capitol Hill to increase awareness of IC and incontinence among Congress and their staff, and to encourage their support of federal research funding for these conditions.
The ICA’s Fourth Annual Capitol Hill Walk held in June was our most successful to date, garnering unprecedented Congressional support, and culminating with a White House meeting.
Due to the ICA’s tremendous efforts, in January 2004 the National Institutes of Health (NIH) announced their plans for a large-scale IC epidemiology study. The NIDDK plans to fund a $5,000,000 study entitled, Interstitial Cystitis/ Painful Bladder Syndrome: Epidemiology.
This fall the NIDDK began planning an IC Awareness Campaign. The goal of the campaign is to raise awareness of IC in the general public and to educate healthcare providers about IC.
The ICA continues to work closely with the National Institutes of Health’s Interstitial Cystitis Clinical Research Network (ICCRN) to conduct clinical trials on promising IC treatments and therapies.
In October, we participated in the NIDDK’s Basic Research in Interstitial Cystitis: 1st Annual Investigator’s Meeting designed to bring federally funded basic science IC researchers together to discuss their research and network with other scientists.
Each year for the past four years the NIDDK has published a compendium that highlights NIDDK-supported basic and clinical research. This year’s compendium features a section on IC titled Basic Research on Interstitial Cystitis – Advancing Toward Clinical Tools, and is available online.
The ICA has consistently attracted media attention to IC and 2004 was no exception. Numerous media articles featuring IC and the ICA were published this year, including:
Lay Publications: Chicago Tribune, New York Daily News, Newsweek, Cornell Women’s Health Advisor, Dr. Donohue, Medscape/Web MD, and the Baltimore Sun.
Professional Publications: Urology, Journal of Urology, Renal & Urology News, Urology Times, The Female Patient, Health & Sexuality, Urologic Nursing, and Office Nurse.