2006 ICA Milestones

Patient Education 2006

In the fall of 2005 the Centers for Disease Control and Prevention (CDC) selected the ICA as its partner to manage and direct a multi-year campaign. The campaign aims to increase national awareness of IC among healthcare providers, patients, and the general public. During this first full year of the grant, the ICA embarked on the planning stages of the many tasks at hand, including the redesign of our website and the ICA Update, as well as expanded outreach at many patient and professional conferences across the country.

During 2006 the ICA sponsored and attended three regional patient forums in Atlanta, Georgia; Columbus, Ohio; and Bethesda, Maryland. In May at the ICA Regional Forum / Atlanta, well-known IC researcher and clinician Robert Evans, MD, of Greensboro, North Carolina, spoke to a gathering of IC patients, friends, and loved ones. In September, IC patients, family, friends, and professionals learned about the latest treatments and ways to live better with IC at the ICA Columbus, Ohio, Regional IC Forum, organized by the Columbus, Ohio, IC Support Group. In October, two of the most renowned IC clinicians, urologist Robert Moldwin, MD, and pain management specialist Daniel Brookoff, MD, PhD, spoke at the ICA Regional Forum / Bethesda. More ICA Regional Forums are being planned for 2007.

The ICA also supported the Interactive Patient Conference on Recent Advances in the Management of Chronic Pelvic Pain Syndrome held in New York City in September. Pain management specialist Subhash Jain, MD, his dedicated staff, and longtime ICA advocate Joeen Ciannella organized the event.

In October, the Boston/MetroWest IC Support Group hosted its Sixth Annual Fall Educational Meeting in October at the Katherine Kennedy Senior Center in Natick, Massachusetts. This was the sixth year that the ICA was involved in supporting and moderating this event.

We also reached out to patients with an exhibit booth at the National Fibromyalgia Association's (NFA's) FAME (Fibromyalgia Awareness Means Everything) conference. The FAME conference, held in the Los Angeles area in March, was the largest-ever fibromyalgia gathering to date in the United States.

The ICA published two new, helpful resources with underwriting from the Medtronic Foundation, including The Many Faces of IC-People Living with Interstitial Cystitis: Their Stories, a collection of some of our most popular and inspiring stories of patients with IC, and Because You Care: Exploring the Unique Intimacy Issues of People with Interstitial Cystitis, a booklet about sexual intimacy for people with IC and their partners. In addition, the ICA began the distribution of the video/DVD (and printed version) IC: Current Concepts from the 2005 University of Maryland Regional IC Forum, including talks by 2003 National Book Award winner, Carlos Eire, PhD, a Yale University professor who is an IC patient, and University of Maryland clinicians and researchers Toby Chai, MD; Susan Keay, MD, PhD; and John Warren, MD.

Thousands of people with IC received help through the ICA's patient services: our website (www.ichelp.org), including IC Question Corner, the toll-free help line (1 800 HELP ICA), National Patient Support Advocates, the ICA Medical Professional Registry, IC Connections email lists, informative email blasts, the ICA's patient newsletter, ICA Update, and Café ICA, our online monthly news digest.

Medical Professional Education 2006

Through support from our partnership with the CDC, the ICA reached out to more health professionals than ever before in 2006 at meetings of urologists, nurses, primary care providers, gynecologists, and pain professionals. In March, the ICA distributed information and resources to nurses eager for the latest IC information at the Society for Urologic Nurses and Associates' (SUNA) Annual Symposium, Disorders of the Bladder, Bowel, and Pelvic Floor, in New York City. In April, we reached out to nurses and other health professionals at the 2nd Annual Urology/Gynecology Nursing Conference at the Cleveland Clinic Foundation in Cleveland, Ohio. In May, we continued our longtime work to reach out to urologists at the American Urological Association Annual Meeting in Atlanta, where there was a poster session dedicated to IC with at least 30 posters presented; several courses on IC; and an IC press briefing. Monica Liebert, PhD, former Director of the Office of Research at the American Urological Association, received with the ICA's annual Advocate of the Year award. ICA President and Founder, Vicki Ratner, MD, presented the award to Dr. Liebert during the Society of Women in Urology's annual breakfast meeting at the AUA annual meeting in Atlanta.

We also celebrated a first when we exhibited in the spring at the National Meeting of the American College of Obstetricians and Gynecologists (ACOG) in Washington, DC. In September, the ICA exhibited at the joint AUA and SUNA Northeast Sectional Annual Meeting in Ottawa, Canada, where Founder and President, Vicki Ratner, MD, presented an overview of IC to nurses. Also during this annual meeting, IC researcher and clinician Grannum Sant, MD, lectured physicians on the most up-to-date IC research and the latest IC treatments. In September, Dr. Ratner was featured on the website www.painEdu.org, an educational website for clinicians, teaching about pain assessment and management. The site posted an interview in which she spoke about the impact of IC on patients' lives, her own experience with IC, why she founded the ICA, and the important work of the association.

Our quarterly online and hardcopy publication for healthcare providers, ICA Professional Perspectives, was viewed by hundreds of thousands online and was also distributed to thousands during 2006 at professional medical education meetings to help to keep the medical community knowledgeable about the latest IC treatments, research, news, and events.

Advocacy 2006

In June 12 patient advocates and family members took the IC message to Washington, DC, for the sixth annual ICA Capitol Hill Walk. Their persistence paid off with specific language in a senate bill that directs NIH to carry out their research commitment. In addition, the ICA was named in the CDC's report language regarding the national IC awareness campaigns directed to healthcare professionals and the general public.

Laura Santurri, IC patient and Columbus, Ohio Support Group Leader, was selected by the Medtronic Foundation to participate in its inaugural Twin Cities Marathon events. Laura was one of 14 medical device patients selected internationally to run in the race that was held in early October and was named a Medtronic Twin Cities Marathon Global Hero.

Research 2006

Pilot studies funded by the ICA helped start the research that may ultimately bring a new treatment to market for IC. In September, Acologix, Inc., a biopharmaceutical company, licensed technology from the University of Maryland, Baltimore, for a promising new, targeted IC treatment.

The ICA's own Pilot Research Program continued its work in conjunction with the University of Chicago's National Organization for Research (NORC) on the Measurements and Evaluation of Trends Relevant to Interstitial Cystitis (METRIC) epidemiology survey. Findings of this study are now being analyzed and prepared for presentation. This large-scale, randomized national study received nearly 3,000 responses from people with IC across the country, and will help to further our understanding of IC and its possible causes.

The Fishbein Family IC Research Foundation continued its support of studies investigating the genetics of IC and potential IC treatment modalities. The Foundation's mission is twofold: to find the causes of, and a cure for, IC, and to relieve discomfort in patients until that goal can be achieved. Many of the Foundation-funded research projects have gone on to receive NIH research funding.

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.

The Rand Corporation embarked on its second year of the NIH-funded five-year national IC epidemiology study Rand Interstitial Cystitis Epidemiology (RICE).

Public Awareness 2006

Consumer magazines, newspapers, television, and radio around the country, and internet sites all carried articles and broadcasts on IC in 2006.

Print media coverage included an article in the February issue of Shape magazine. "Mystery Symptoms," by Kristyn Kusek, covered IC along with seven other common illnesses that doctors tend to miss or misdiagnose. Dr. Ratner was quoted in the section about interstitial cystitis, and the ICA's website was also listed as a helpful information source.

In July, the Central New York IC Support Group garnered coverage in both the print and online editions of Syracuse's Post-Standard newspaper with an article by Amber Smith in Health Notes that discussed IC and the support group's efforts. In November, Paul Donohue, MD, featured IC again in his very popular, nationally syndicated medical advice column.

Norma Kellam, a dedicated ICA volunteer in southern California who is fluent in Spanish had her articles about IC published in Latino Newspaper in Columbia, South Carolina, and Prensa Hispana in Phoenix, Arizona. Prensa Hispana also published a companion piece about IC by a physician. Norma has also been responsible for IC coverage in La Voz, a Spanish language newspaper in New Jersey, and Hispania News in Colorado.

IC received national television coverage in the spring on the Public Broadcasting System's series Healthy Body, Healthy Mind in a segment produced by the Information Television Network (ITV). The show featured interviews with Dr. Ratner; Dr. Moldwin; C. Lowell Parsons, MD; Matt Rosenberg, MD; actress Melody Thomas Scott (from TV's The Young and the Restless); and Interstitial Cystitis Network Medical Publishing Company Founder Jill Osborne.

Also in spring, longtime Patient Advocate and ICA Volunteer, Rhonda Garrett, of Tampa, Florida, was featured on the evening news program of Fox 13 Tampa Bay. Rhonda spoke about her struggle with IC on the Dr. Jo segment of the show. In September, Hiram, Ohio, IC patient Angi Daczko and her husband Joe were interviewed on Ohio News Network (ONN), Ohio's 24-hour cable news, weather and sports channel. Joe talked about his efforts to raise money for the ICA and awareness of IC with his runs in the Road Runner Akron Marathon. Angi spoke about her personal experience with the disease. The segment aired during ONN's live coverage of the marathon.

Healthy Friday, a monthly call-in show on WXXI Public Radio of Rochester, New York, devoted their February show to IC. Show Host Elissa Orlando spoke live with Dr. Ratner as well as local Rochester urologists Hilary Cholhan, MD, and Robert Mayer, MD, who both treat many IC patients. In September, Dr. Ratner and urologist Kurt McCammon, MD, were the guests on Patricia Raymond, MD's weekly program, House Calls, on WHRV, Hampton Roads, Virgina's National Public Radio station. The show, "Gotta Go, Gotta Go," tackled all types of bladder problems, from incontinence to IC.

Michael Chancellor, MD, University of Pittsburgh Medical Center and Director of CURE-IC, and his University of Pittsburgh colleagues developed a webcast and DVD program, Awareness and Hope for Interstitial Cystitis. The project featured Dr. Ratner; Dr. Chancellor; Colleen Dunwoody MS, RN; Margie O'Leary, MSN, RN; and Susan George MS, PT.

Web media covering IC included the News Journal of Delaware Online, and MSNBC. In March, the newspaper's online edition had an article on IC, "Painful Bladder Condition Difficult to Diagnose," by James J. Cosgrove, MD, Chairperson of the department of obstetrics and gynecology at St. Francis Hospital in Wilmington, Delaware. In April, the online edition of the South Carolina newspaper, the Anderson Independent-Mail ran a question-and-answer column titled "How to Manage Symptoms of Bladder Infection," which, despite the title, mainly concerned IC and gave the ICA's website and toll-free number. Today Show contributor and ob/gyn Judith Reichman, MD, answered questions about IC in an April column online.

In August, IC was the featured topic of the online radio program Pain Tamers, which is hosted by Helen Dearman, Founder and Executive Director of the National Chronic Pain Association (www.ncps-cpr.org). Cindy Sinclair, President of IC United, a nonprofit network of IC support groups in Houston, Texas, ICA Patient Advocate Linda Salin, and ICA Director of Communications Ann Chesnut, joined in the hour-long broadcast. Through web media, patients started fundraising efforts for the ICA. This fall, Angi Daczo set up her online jewelry business to donate a portion of sales to the ICA and the site links to ours. In October, the musician's showcase Cirque du Singe Brisé, created by music promoter Rich Van Vleet, released a CD whose proceeds support the ICA. Cirque's website links to the ICA, and the CD's liner notes also urge visitors to learn about IC, to go to the ICA's website, and to help cure this disease.