INTERSTITIAL CYSTITIS ASSOCIATION Annual Report

Beyond the Bladder: Moving Toward Better Understanding

A n n u a l Re p o r t f o r t h e Fi s c a l Ye ar En d i n g Se p t e m b e r 30, 2008 ICA Annual Report

The Interstitial Cystitis Association (ICA) is committed to finding more effective treatments and ultimately a cure for interstitial cystitis (IC). Interstitial cystitis is an often painful, chronic bladder condition that severely affects the quality of life for millions of individuals in the United States and throughout the world.

The ICA is an organization of many. Dedicated staff members, compassionate volunteers and generous financial contributors all play a role to:

• Promote and fund research • Advocate for IC patients, healthcare providers, and researchers • Educate the medical community and public • Offer support for IC patients and their families Beyond the Bladder: Moving Toward Better Understanding

In an online survey conducted through the ICA’s website in with IC, including a host of urinary tract ailments, June 2008, more than 85% of participating IC patients re- fibromyalgia, IBS, back pain, anxiety, depression, gastritis ported that they had been diagnosed with and treated for at and other GI tract problems. 2 least one other known related condition – such as irritable bowel syndrome (IBS), fibromyalgia, or chronic fatigue • Researchers at the William Beaumont Hospital in syndrome (CFS) – in addition to IC. One puzzling factor to Royal Oak, Michigan report that the correlation between emerge from this data is that half of the patients surveyed IC and vulvodynia has been underestimated. Their initial reported that their IC symptoms came first, while the other findings indicate that 25% of women with IC also suffer half reported the related condition symptoms preceded their from vulvodynia.3 IC symptoms. Clearly, there is much we still have to learn about root causes and overlapping conditions. Creating awareness of the connection

Linking IC with Other Chronic Conditions IC awareness and education messages now routinely include information about how interstitial cystitis can be Research first conducted in 1997 by Dr. Madhu Alagiri related to a host of other chronic conditions. In the past et.al. was in the news again this past year. Alagiri and his year, the ICA forged relationships with other independent research team observed what many IC patients – along with nonprofit organizations and formed the Overlapping their healthcare providers, friends and loved ones – recognized Conditions Alliance to collaboratively leverage the strength long before: there is something going on that extends of a united message. Because of strong ICA advocacy, beyond the bladder. The co-occurrence of other chronic the National Institutes of Health (NIH) agreed to fund a diseases with IC and with one another, are at measurably multi-year study to further understand the possible higher rates than in the general population. relationships between IC and several related conditions.

During the past fiscal year, new research findings This extraordinarily significant paradigm shift necessitates regarding overlapping conditions have echoed Alagiri’s a very different, innovative approach. We need to begin to observations. For example: think beyond the bladder.

• A collective study based out of the University of Maryland found 11 chronic conditions to be more 1 Urology. 2009 Jan;73(1):52-7. Epub 2008 Nov 8. Antecedent nonbladder syndromes in case-control study of interstitial cystitis/painful bladder common in IC patients than in the healthy controls: syndrome. Warren JW, Howard FM, Cross RK, Good JL, Weissman MM, Wesselmann U, Langenberg P, Greenberg P, Clauw DJ. Department of allergy, depression, migraine, irritable bowel syndrome, Medicine, Epidemiology and Preventive Medicine, and Neurology, panic disorder, endometriosis, asthma, fibromyalgia, University of Maryland School of Medicine, Baltimore, Maryland, USA. chronic widespread pain (CWP), chronic fatigue 2 J Urol. 2008 Jun;179(6):2222-5. Epub 2008 Apr 18. Case-control study of medical comorbidities in women with interstitial cystitis. Clemens JQ, syndrome, vulvodynia, and sicca (Sjögren’s) syndrome.1 Meenan RT, O’Keeffe Rosetti MC, Kimes TA, Calhoun EA. Department of Urology, University of Michigan Medical Center, Ann Arbor, Michigan 48109, USA. [email protected]

• A University of Michigan Medical Center team 3 Int Urogynecol J Pelvic Floor Dysfunct. 2008 May;19(5):665-9. Epub 2007 Nov. Painful bladder syndrome/interstitial cystitis and vulvodynia: a clinical presented a comorbidities research study which found correlation. Peters K, Girdler B, Carrico D, Ibrahim I, Diokno A. Department 23 chronic conditions to be more common in people of Urology, William Beaumont Hospital, Royal Oak, MI, USA. Table of Contents

OUR MISSION

Promote and fund research...... 1 • Advance knowledge about overlapping conditions...... 1 • Fund IC seed research...... 1-2 • Promote the latest research findings...... 2-3 • Track changing IC statistics...... 3

Advocate for IC patients, healthcare providers, and researchers...... 4 • Provide a voice for the IC healthcare community...... 4 • Advance public policy...... 4-5 • Crusade for the IC patients who are in chronic pain...... 6-8

Educate the medical community and public...... 9 • Expand understanding within the healthcare community...... 9-10 • Educate future physicians...... 10 • Raise awareness of the general public...... 11-14

Offer support for IC patients and their families...... 15 • Respond to public inquiries...... 15 • Sponsor patient forms...... 15 • Provide 24/7 access to health information...... 15

ENSURE SOUND FISCAL PRACTICES...... 16 Financial Highlights of Fiscal Year Ending September 30, 2008...... 16-17

YOUR GENEROSITY MAKES IT HAPPEN...... 18-28

Seven-year old OUR TEAM...... 29 Mykah Bacy with Board of Directors...... 29 Nurse Practitioner Medical Advisory Board...... 29 Saundra Seidel. Staff, Consultants, and National Patient Support Advocates...... 30 Both Mykah and her mother have IC.

Promote and fund research

Advance knowledge about funded by a non-profit, patient-driven association. overlapping conditions This past year Pilot dollars funded the following four research teams whose goals are to: The ICA has an ongoing commitment to research advocacy, funding, and promotion. Therefore, it • Increase our understanding of IC – should not come as a surprise that many of the Berkley, PhD was awarded funding to landmark IC research achievements across the last study the Influence of Endometriosis on Bladder 25 years – including the connection of IC with Function: Basic Studies in a Rodent Model other chronic conditions – are a direct result of ICA efforts. We sustained our dedication to these areas throughout fiscal year 2008.

During the past year, the ICA continued work to ensure that the Multidisciplinary Approach to Pelvic Pain (MAPP) Research Network, sponsored by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), became a reality. This five year, federally-funded MAPP initiative dedicates more than $37,500,000 • Investigate a potential diagnostic tool – to uncovering the connection between IC and Rodriguez-Saona, PhD, Gilleran, MD, and overlapping conditions. In a major shift Buffington, DVM, PhD, received grant dollars from the past, the research employs a for the Validation of a Rapid and High multidisciplinary, highly collaborative, Throughput Method of Diagnosis of Interstitial multi-site foundation to conduct basic science, Cystitis by Infrared Microscopy translational and clinical research on chronic pelvic conditions – interstitial cystitis/painful • Study osteopathic manipulation as a potential bladder syndrome (IC/PBS) and chronic treatment – Sastry, MD, Sperling, DO, Rejba, prostatitis/chronic pelvic pain syndrome RN, Mosiniak, AS, Whitmore, MD, were awarded (CP/CPPS), and their potential links with related a pilot grant for the Osteopathic Manipulation conditions – from an expanded systemic point of as a Therapeutic Intervention for Female view. Through its key position on the MAPP Interstitial Cystitis Patients with High-tone steering committee, the ICA will continue to Pelvic Floor Dysfunction play an integral role in the development of this groundbreaking initiative. • Epidemiologic study – Warren, MD, Jacobs, MD, Langenberg, MD, Greenberg, MA received Fund IC seed research funding to continue efforts to conduct a comprehensive analysis of the IC population in The ICA Pilot Research Program remains the first their study Natural History of 314 Incident IC/ and only interstitial cystitis research program PBS Cases 1

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Promote and fund research

Marianne hub for current IC studies as well as the latest Schuster, former research highlights. Each month the electronic Co-Chair of the news digest, Café ICA, provided lay summaries ICA Board of of IC research findings from peer-reviewed Directors and long-time scientific journals. supporter, gives opening remarks Reporting daily from the floor of the 2008 at ICA Medical American Urologic Association (AUA) Annual Advisory Board Meeting, ICA email blasts highlighted relevant sessions for four consecutive days. The number of sessions dedicated to IC signified Additionally, in FY2008, the Fishbein Family IC that IC is becoming a much higher priority in Research Foundation, founded in 1997, disbursed urology practice and research. The AUA offered more than $61,000, funding further investigation three different courses on IC, a podium session of the following: was devoted entirely IC, and the NIDDK announced that it is placing new emphasis on • Antiproliferative factor (APF) – the biomarker IC research. Two ICA publications recapped unique to people with IC that holds promise as a highlights of the AUA annual meeting: diagnostic test as well as a treatment. • Hormones and stress in people with IC – a study ICA Update - The Fall 2008 issue explored of the effects of the hormones prolactin and the most up-to-the-minute IC research oxytocin on pain levels. Findings released developments from the AUA Annual Meeting. in 2008 indicate that oxytocin may help to The introductory article in the issue, From reduce bladder pain and anxiety related to pain. Research to You, outlined the many steps it takes • Noninvasive bladder testing – examination of to get a new IC treatment to the marketplace, specific proteins in IC patients’ urine that are gave a short history of IC research efforts and known to be produced in higher amounts. outcomes, and showed how scientists are The results could lead to a urine test for IC. learning more about IC, even from medical • Genetics links – exploration of IC in multitudes and research failures. of families to pin down the possible genetic factors of IC. Professional Perspectives - The Summer • Overlapping conditions research – investigation 2008 issue of this scientific newsletter covered of the relationship of IC with other disorders. AUA research presentations and discussed the relevancy of these new findings to clinical Promote the latest practice and patient care. research findings

During the past year, the ICA continued to connect researchers and patients through clinical trial recruitment efforts. Blast emails informed patients about clinical trial recruitment opportunities, and www.ichelp.org served as a Track changing IC statistics

As more research is being conducted and education about IC grows, we are finding that much of the past diagnostic history about IC excluded some very significant criteria.

• Gender bender – the female to male ratio for IC is narrowing. Men account for a higher proportion of patients with IC than has previously been recognized.4

• Many women with IC experienced bladder and bowel problems in childhood.5

• Urinary tract disorders occur more frequently in people with IC, as do GI tract ailments and other chronic conditions beyond the bladder.6

• Sexual dysfunction is high in people with IC.7

4 J Urol. 2005 Jan;173(1):98-102; discussion 102. Prevalence and incidence of interstitial cystitis in a managed care population. Clemens JQ, Meenan RT, Rosetti MC, Gao SY, Calhoun EA.

5 Urology. 2009 Feb;73(2):258-62. Epub 2008 Nov 25. Childhood symptoms and events in women with interstitial cystitis/painful bladder syndrome. Peters KM, Killinger KA, Ibrahim IA.

6 J Urol. 2008 Jun;179(6):2222-5. Epub 2008 Apr 18. Case-control study of medical comorbidities in women with interstitial cystitis. Clemens JQ, Meenan RT, O’Keeffe Rosetti MC, Kimes TA, Calhoun EA. Department of Urology, University of Michigan Medical Center, Ann Arbor, Michigan 48109, USA. [email protected].

7 W V Med J. 2008 Nov-Dec;104(6):18-21. Sexual dysfunction in patients with painful bladder syndrome. Zaslau S, Brown ET, Fooks H, Riggs D, Jackson B, Osborne J, Kandzari SJ. Division of Urology, Department of Surgery, Robert C. Byrd Health Science Center, West Virginia University, Morgantown, USA.

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Advocate for IC patients, healthcare providers, and researchers

ICA advocacy has many facets. We advocate committee, millions of Americans with IC can through extensive involvement with the National rest assured the ICA is looking after their best Institutes of Health (NIH), nonprofit healthcare interests. Our seat is a boon for IC patients associations, and Congressional Representatives because it will help doctors who are not IC and policymakers. We also inspire, educate, train, researchers or IC specialists learn about the best and thus empower many individuals with IC who available and most effective treatments. This team become activists for the cause, representing IC of internationally known IC experts is working to patients in the media, on Capitol Hill, and at develop evidence-based treatment guidelines. For meetings and conferences. a condition like IC, this is a challenging exercise because there is little scientific evidence to The ICA is present when patient organizations support specific treatments. That means guidelines collaborate to ensure that interstitial cystitis is committee members need to draw heavily on their included. And when researchers and clinicians clinical experience to interpret and rate potential meet to discuss approaches to the study or treatment options. The committee’s goal is to treatment of IC, the ICA is there to make sure the complete this first set of guidelines in 2011. needs of IC patients become part of the solution. There is more to come on this initiative, and we will provide regular updates on the committee’s progress.

Advance public policy

Throughout 2008, ICA government affairs staff met with legislators, educating them about the continued need to advocate for people with IC. In the spring of 2008, ICA Executive Director, Barbara Gordon; Fishbein Foundation President, Laurie Fishbein; Associate Executive Director of the National Vulvodynia Association (NVA), President of the Fishbein Foundation, Chris Veasely; and Government Affairs consultant Laurie Fishbein, with New York

Congresswomen, Nita Lowey Libby Mullin met with New York Congresswoman Nina Lowery to raise awareness about the overlap of IC, vulvodynia and pelvic pain. Working Provide a voice for the IC collaboratively, NVA and ICA submitted language healthcare community requesting the federal government to dedicate funding to scientific research on the overlap of IC, As a national advocate for IC patients, healthcare vulvodynia, and chronic pelvic pain. providers, and researchers, the ICA serves as a voice for those with IC, some of whom are too Advocacy efforts also focused on the many IC isolated or too sick to speak on their own behalf. patients who are in chronic pain, which can radically alter the ability to work, affect family Through our seat on the American Urologic and friend relationships, and significantly lower Association’s (AUA) IC Treatment Guidelines the quality of life. Through collaboration with ONE VETERAN’S IC EXPERIENCE other nonprofit patient organizations and “It was several years after I grassroots efforts, the ICA garnered attention at the returned to Georgia from my federal level for people in pain. tour of duty on the USS Vulcan,” Gulf War veteran • Better access to pain management is closer to reality Tom Lavender recounts, because of the National Pain Care Policy Act of “that my IC symptoms began.” Tom was 2008 (HR 2994), passed unanimously by the House diagnosed in 1997 and, once he was able to of Representatives in the fall of 2008. At the close find a physician experienced in IC, began of this ICA fiscal year, the bill was with the Senate treatment. His doctor also told him about the Committee on Health, Education, Labor, and ICA. “I became a member of the ICA and Pensions. The ICA continues to actively began to find the information I had been advocate for passage of this important legislation. seeking,” states Tom. He also reached out to • We called upon the IC community to contact their inform and comfort other people with IC. congresspeople about necessary pain management for long-term chronic pain disabilities for veterans. Tom wrote a letter about IC to the editor of These efforts helped to pass both the Veterans Pain his local paper that was published. “My hope Care Policy Act (S 2160) and Military Pain Care was that I would reach people who might have Policy Act of 2008 (HR 5465) in October of 2008. symptoms of the condition and that my story would help them seek medical care,” he recalls. We also closely monitored 12 healthcare reform The letter did have an effect. Tom discovered meetings with an ear to the needs of people with IC, it even helped educate a future doctor. A local as well as the healthcare providers and researchers young man who was in medical school at the who strive to help them. Examples include: Medical College of Georgia read the letter and began learning more about IC. “Still, there’s a • Legislative sessions with Senator Edward Kennedy lot of educating to be done,” Tom knows. in Washington, DC: At the beginning of this fiscal year, ICA government affairs consultant, Libby Tom would like to see physicians pour more Mullin, participated in a series of meetings with of their energies into research. And he is lobbyists and lawmakers hosted by Kennedy with thankful he is a state employee with health the aim of crafting a “shovel-ready” plan to deliver insurance. “If I had no insurance right now, to the new president. The plan is aimed at providing I’d be sweating bullets!” he exclaims. affordable coverage for all Americans.

• National Health Council (NHC) Government He is doing better today than he was in 1997. Relations Affinity Group meetings hosted in Tom has limitations, but he’s philosophical Washington, DC on a monthly basis: As a member about them. He can’t travel much, but he quips, of this coalition, which serves as a powerful voice “I spent four years in the Navy, so I am not to people with chronic diseases and disabilities and worried about traveling too much.” their caregivers, the ICA has participated in healthcare reform meetings and the development of healthcare But he still has for a wish for all people reform policy initiatives intended to ensure with IC - a cure. adequate health coverage for IC patients.

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Crusade for the IC patients

The ICA participated in numerous IC-related research meetings In fiscal year 2008.

• March 31, 2008 The American Urological Association (AUA) Foundation sponsored the inaugural Patient Advocacy Summit. The Summit brought together more than 20 representatives from16 patient advocate and direct-service organizations involved in prostate, bladder health and wellness – including Barbara Gordon, Executive Director of the ICA. The meeting’s purpose was to discuss the limited awareness of urologic diseases and sparse funding for urologic research. One outcome of this summit was a proposal to create the Urologic Advocacy Coalition. Although initially the coalition was to focus on prostate health and bladder incontinence, the work done at the summit expanded its purpose to include collaborative work on raising awareness and advocacy for additional research funding in urology.

• March 31, 2008 The leaders of nine patient advocacy groups representing significant numbers of people with overlapping conditions met in June to discuss the potential of joining forces on the fight for more research dollars and unifying patient advocacy efforts. The represented groups were:

• Anxiety Disorders Association of America • Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Association of America • Endometriosis Association • International Foundation for Functional Gastrointestinal Disorders • Interstitial Cystitis Association • National Fibromyalgia Association • National Sleep Foundation • National Vulvodynia Association • TMJ Association

Discussions focused on common challenges and the potential value of forming a coalition to jointly raise awareness about comorbid conditions, advocate for research dollars and patient rights, and work to educate patients, healthcare providers, and the public about the phenomenon of overlapping conditions. The meeting concluded with each organization committed to gathering feedback from their constituents on forming the coalition, providing input regarding the potential scope and mission of the coalition, and offering common roots and physiological pathways among recommendations on initial efforts. these conditions for further understanding of all of them, and conceivably provide innovative • June 1 - 3, 2008 targets for diagnosis and therapy. Because the The Fifth Scientific Meeting of The TMJ meeting brought together scientists and Association focused on conditions often found to clinicians knowledgeable about each of the be comorbid with temporomandibular joint and complex conditions, we hoped to stimulate muscle disorders (TMJDs). These include chronic cross-collaborative studies as a means to headache, generalized pain conditions, accelerate research progress and ultimately irritable bowel syndrome, endometriosis, benefit patients. Toward that end, the TMJ interstitial cystitis, vulvodynia, fibromyalgia, Association invited young investigators to chronic fatigue syndrome, and rheumatoid stimulate their career commitments to engage arthritis. The goal of the meeting was to discover in TMJD and related research. Patients also participated in panel presentations and discussions, providing opportunities for experts and patients to learn from each other in formal and informal exchanges.

• June 3, 2008 In concert with the TMJ Association’s scientific meeting, Barbara Gordon attended the Second Overlapping Conditions Meeting held on June 3. Attendees included leaders of key patient advocacy groups representing related chronic pain conditions. Organized by the TMJ and Vulvodynia Associations, the meeting agenda focused on sharing lessons learned in regards to overlapping conditions, as well as potential areas for collaboration.

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Advocate for IC patients, healthcare providers, and researchers

pain syndromes. Updates were given on such topics as: classifying urologic chronic pain syndromes, advanced diagnostic studies for characterizing the pain syndromes, epidemiological data for overlap of chronic pelvic pain syndromes, developing biomarkers for the chronic pain syndromes, as well as many other topics. The meeting explored the pros and cons of developing a unifying definition, as well as the need for phenotyping persons with these disorders. Interactive discussions were strongly encouraged among speakers, participants and the panel of consultants. A major outcome was development of a definition of these diseases and their phenotypes, which will be used in future NIDDK-funded research studies and the upcoming network for a Multidisciplinary Approach to the Study of Pelvic Pain.

• June 5-7, 2008 The European Society for the Study of IC/PBS (ESSIC) held its annual meeting June 5 through 7 in Rome, Italy. At the meeting, ESSIC, which consists of a small group of primarily European researchers and clinicians, reaffirmed their preference for using the name “bladder pain syndrome” which would eventually replace the name “interstitial cystitis.” Many of the ESSIC members will begin to publish studies about IC under the name bladder pain syndrome/ interstitial cystitis (BPS/IC). To help further define and characterize IC, ESSIC announced plans to develop an international database of IC patient profiles. In support of IC patients, Barbara Gordon attended the public sessions held on June 6 and 7.

• June 16-17, 2008 The ICA participated in the NIDDK symposium, “Redefining the Urologic Chronic Pelvic Pain Syndromes: A New Beginning,” held June 16 and 17. The purpose of the symposium was to enlist expert opinion related to the multiplicity of factors involved in defining the urologic pelvic EDUCATE THE MEDICAL COMMUNITY AND PUBLIC

As awareness and understanding of interstitial Strategically leveraging the power of the cystitis grows, the ability for people with IC to medical media, the ICA ran ads in Urology Times be properly diagnosed, and treated quickly and and ACOG Today to maximize our exposure at the effectively grows too. In this fiscal year, the ICA conferences and further strengthen our messages. further broadened its reach to all audiences. These special issues were distributed to attendees at the annual meetings of the AUA and ACOG, Expand understanding and mailed to all subscribers. Urology Times is within the healthcare distributed to 10,652 U.S. Urologists. community By placing our ad in the May edition of the publication, the ICA was able to reach an addition- To speed time to diagnosis, help ensure patients al 4,000 bonus attendees at the AUA annual receive the latest treatment, and help healthcare meeting. ACOG Today has a circulation of just providers understand what it is like to live with over 51,000, reaching OB/GYNs and other IC, we worked diligently to raise awareness women’s health professionals. For the May among the medical community. issue of ACOG Today, we again received a bonus distribution of 5,000 at the ACOG annual clinical In fiscal year 2008, more than 1,000 healthcare meeting. It is our hope that, through healthcare providers received printed versions of the ICA’s professional outreach projects such as these, both publication, Professional Perspectives, exposing providers and patients will be better served. them to the latest developments in IC research and treatments, as well as other breaking IC medical IC patient Laurie Elmes, RPh CDE, a pharmacist news. Professional Perspectives is a quarterly at Columbus Regional Hospital, in Columbus publication the ICA offers in print and online, Indiana, took advantage of the ICA’s PowerPoint free-of-charge, to keep the medical community presentation Interstitial Cystitis: What Healthcare up-to-date on the latest IC news and information. Providers Need to Know and other ICA informational materials for her presentations to By exhibiting and networking at national medical the Indiana Medical-Surgical Nursing Association. meetings, the ICA also helped more than 16,000 Additionally, she used these tools to educate her healthcare providers to better understand IC. fellow employees at Columbus Regional. Both new and seasoned healthcare providers received the latest IC news when they stopped IC made the cover of Urology Times in its by our exhibits at: August 1 edition, which featured the comprehen- sive article Urologic Pelvic Pain: Diagnosis and • Society of Urologic Nurses and Associates Management, by Arun Srinivasan, MD; ICA (SUNA) Annual Conference and Annual Medical Advisory Board member Robert M. Symposium Moldwin, MD; and Jonathan D. Kaye, MD. • American College of Obstetrics and Gynecology (ACOG) Annual Conference The ICA also partnered with the Association of • American Pain Society’s (APS) Annual Meeting Reproductive Health Professionals (ARHP), to • American Urological Association’s (AUA) provide continuing medical education sessions Annual Meeting to IC healthcare providers and researchers. • Annual Scientific Meeting of the American Urogynecologic Society (AUGS).

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In late 2007 and early 2008, Lee P. Shulman, MD and ICA Medical Advisory Board members Robert Moldwin and Kristene Whitmore, each conducted well-attended live webinars using this module.

Approximately 1,100 healthcare providers have participated in the IC continuing medical education (CME) program created in partnership with the Association of Reproductive Health Professionals (ARHP), either at a live session, in a live webinar, or by accessing online archived webinars.

Additionally, the ICA and ARHP developed a number of new educational tools for use by healthcare professionals and patients. Nurse and IC Patient, Risa Cohen, with AMSA • We produced a new patient Health Matters Fact Conference Chair, Andrew Ray Sheet, What You Need to Know about IC, in 2008 which is available in English and Spanish. Las Vegas, Nevada. Diane A. Smith, MSN, • We also created a PowerPoint IC medical CRNP, who sits on the expert medical advisory education slide module with talking points. committee of the Interstitial Cystitis Association/ This presentation was used at 10 national and Association of Reproductive Health Professionals, regional society meeting visiting faculty used the educational module Screening, Treatment, sessions that were held. and Management of Interstitial Cystitis/Painful Bladder Syndrome (IC/PBS) to present to a • We generated a special issue of ICA packed room. Professional Pespectives, and ARHP developed a Quick Reference Guide for clinicians. Educate Future Physicians

The ARHP dedicated their April 2008 edition At the American Medical Student Association of Clinical Proceedings, an accredited clinical (AMSA) Regional Conference in Portland, Maine monograph, to the subject of IC. Entitled in November 2007, IC patient and nurse, Risa Screening, Treatment, and Management of Cohen, RN, presented a breakout session entitled Interstitial Cystitis/Painful Bladder Syndrome, this Diagnosis and Treatment of Interstitial Cystitis. medical education tool is primarily used by nurse The ICA supplied Cohen with the ICA Healthcare practitioners, nurse midwives, pharmacists, Professional PowerPoint presentation and a num- physicians, physician assistants, and public ber of printed materials to hand out. The confer- health professionals. ence, People Treating People, which targeted both medical and pre-medical students, was hosted by In August, the National Black Nurses Association The University of New England College of Osteo- hosted its 36th Annual Institute and Conference in pathic Medicine. Raise awareness of the In 2007, interstitial cystitis general public was number five among all Patient and public education provides valuable the items people searched opportunities for undiagnosed individuals to on the information service consider IC as a possible diagnosis. It also website of the National offers new hope and new choices to those already struggling with IC, along with Institute of Diabetes and networking and support resources. Digestive and Kidney and Urologic Diseases In FY 2008, the ICA provided patient (NIDDK). The third most education and increased public awareness popular publication the through a number of channels. information service sent out was Interstitial • The ICA Update magazine went to 40,000 people, with issues focused on Cystitis/Painful Bladder topics such as pelvic floor Syndrome. And in 2008 dysfunction, compounding NIDDK published a new, pharmacies, new trends in easy-to-read booklet, neuromodulation, and IC What I need to know and overlapping conditions. about Interstitial ANDING KN O W L EDGE AND AWARENESS Cystitis/Painful Bladder • The ICA sponsored three

E XP Syndrome. regional patient forums held in Phoenix, Arizona, Tampa, Florida, and Tulsa, Oklahoma. Each forum served as an opportunity to raise awareness about IC, and the special

challenges of people living Daniel Brookhoff Dr. with IC, among the public. Experts in the field (Drs. Daniel “I can’t tell you how much Brokhoff, John Forest and Robert the added support of the Evans) updated audiences on the ICA has encouraged me and latest IC treatment and research given me a feeling of ‘yes, information. there is something I can do Dr. John Forrest Dr. and a place to get answers.’ • More than 500,000 online users accessed free health information on My symptoms are man- www.ichelp.org. Daily users of the ageable for the most part ICA website increased to over 2,100. greatly due to informational sources such as ICA • Over 50,000 publications were Update.” Ju d y distributed to patients, healthcare Robert Evans Dr.

11 12 ICA Board members Barbara and Eric Zarnikow with Barack Obama, before his presidential election. EDUCATE THE MEDICAL COMMUNITY AND PUBLIC

providers and the public, providing specific details about IC, treatment options, self-help measures, coping strategies and more.

• ICA’s free online monthly news digest, Café ICA, was sent to 28,000 individuals, keeping them up-to-date on medical highlights, diet issues, self-help and coping, and other news. Thousands more visited our website to view monthly editions of Educating the Public Café ICA online throughout the year.

• More than 500,000 readers learned more about IC The October 8th, 2007 edition from an ICA Champion, a patient or clinician who agreed to be interviewed by national print media of the Chicago Daily Herald outlets. featured an in-depth article IC Media Coverage about IC by Susan Stevens. Continues on Local, National The article, 40 Bathroom Trips a and International LevelS

Day, includes interviews with two November 2007 longtime IC advocates and ICA Longtime New York Times personal health columnist Jane E. Brody included interstitial cystitis in supporters, Rhonda Garrett and her November 6th column, Living with Pain That Just Barb Zarnikow. Rhonda is currently Won’t Go Away. This was the first of three columns that are being dedicated to chronic pain issues. an ICA Board member, has been an ICA advocate for many years, and Atlanta Latino, Atlanta’s free weekly 60-page bilingual (Spanish and English) newspaper has been featured numerous times published an online article about IC. Outreach to in IC media coverage. Barb, who diverse communities is a very important aspect of the ICA’s mission. is also an ICA Board member and The Internet radio show, Patient Power with patient advocate, is the founder and Andrew Schorr, featured an hour-long segment on IC, leader of the Northwest featuring Dr. Robert Moldwin (pictured below), ICA medical advisory board member. Suburban Interstitial Cystitis Support Group of Illinois. Her husband, Eric, also serves on the ICA Board of Directors. EDUCATE THE MEDICAL COMMUNITY AND PUBLIC

Division of Urogynecology and Pelvic Reconstructive Surgery at USF Health.

The Monday, January 28, edition of the Staten Island Advance featured the article Interstitial Cystitis: Understanding a Painful Bladder Condition, by Joanne Lamonica, MD, a practicing urologist from Staten Island, New York.

February 2008 In early February, CBS 46 News – Atlanta featured a segment about IC. Interviewed for the story were Kim Waitz and her physician Denise Pecht, MD, Internationally-known IC expert, Dr. Robert Moldwin, both of the Atlanta area. Waitz endured 20 years teaches physicians and other healthcare providers of misdiagnoses before she received a diagnosis about IC. of IC. Dr. Pecht treats over 300 women with IC in her practice. December 2007 The December 1 issue of Urology Times features the article Cyclosporine Shows ‘Dramatic’ Results in Severe Interstitial Cystitis by Penny “I wrote explaining some of the Allen, ICA medical writer who is also a bladder issues I was having and freelance medical reporter. Cyclosporine is an immunosuppressant medication that is being wanted to know if I had IC or not. considered in the treatment of severe IC. I went to a urologist about two

On December 4, the Internet radio show, weeks ago and was finally Patient Power with Andrew Schorr, featured an diagnosed. I just wanted to thank hour-long segment on IC – again! The producers of Patient Power reported that the November 1st you so much for the info you sent show featuring IC was so successful that they me. I showed it to the urologist and scheduled another show on IC for December. It drew an overflow crowd, as well. he said he wouldn’t have thought of IC. Since I’ve been diagnosed with January 2008 The January 31 edition of the Tampa Bay Tribune something and know it isn’t all just featured a column on interstitial cystitis by Tribune in my head I am so much happier. columnist, Stuart Hart, MD. The article, entitled Painful Bladder Syndrome May Elude Diagnosis, Again, thank you so much for giving featured information about IC symptoms, me the answers I was looking for diagnosis, and treatments, and the story of an IC patient and activist. Dr. Hart is an assistant seven years.” Al y s s a professor of obstetrics and gynecology in the

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EDUCATE THE MEDICAL COMMUNITY AND PUBLIC

April 2008 The July 29 print and online editions of The Irish An article about IC appeared in the National Times, out of Dublin, Ireland, featured a question Fibromyalgia Association’s e-newsletter and answer column that talked about IC entitled Fibromyalgia ONLINE. This issue of Check-up with Marion Kerr. Fibromyalgia ONLINE was dedicated to conditions such as IC that have been shown August 2008 through research and anecdotal evidence to The August 28 edition of the Louisville Courier- occur more often in people with fibromyalgia. Journal features IC in an article about urinary tract Other related conditions covered in this issue infections by Darla Carter entitled Urinary Tract include chronic fatigue syndrome, restless legs Infection Symptoms Deceiving. syndrome, and Sjogren’s syndrome. The cover story of the August 1 clinical edition of May 2008 Urology Times features the comprehensive article Fox 29/WFLX, a television station based out of “Urologic Pelvic Pain: Diagnosis and West Palm Beach, Florida, ran the article Chronic Management” by Arun Srinivasan, MD; ICA Pelvic Pain: Diagnosis and Treatment, on their Medical Advisory Board member Robert M. website. The informative and compassionate Moldwin, MD; and Jonathan D. Kaye, MD. article focused on IC, endometriosis, and also other causes of pelvic pain. Emphasizing that Clinical Edge, a syndicated column from Mayo chronic pelvic pain is real – not in your head – Clinic, featured IC . The column appeared in the and can be very debilitating, the article stressed Chicago Tribune and the Rochester Post-Bulletin. that obtaining the correct diagnosis (or diagnoses in some cases) is the first step in getting relief. September 2008 The September issue of Self magazine discusses June 2008 IC in an article by Lisa Callahan, MD, entitled Is In mid-June Paul G. Donohue, MD, author of There a Doctor in the House? The article covers the popular syndicated newspaper column frequently asked women’s health questions. To Your Good Health, addressed the topic of IC in his response to a question posed by a reader who asked for more information about IC. To Your Good Health appears in newspapers across the country.

July 2008 The Spartanburg, South Carolina Herald-Journal focused on IC in a July feature article. Elizabeth Bozeman, MD, who treats people with IC at The Urology Center in Spartansburg, SC, was interviewed, along with Karen Fann, a nurse with a mild case of IC and Rhonda Greenway, who has the Hunner’s ulcer form of the disease. Offer support for IC patients and their families

Respond to public inquiries RUNNING TO SUPPORT The ICA’s toll-free telephone hotline and the IC PARTNERS online IC Question Corner offer one-on-one support and information: ICA Champions Joe Daczko • ICA staff and volunteers responded to more and Angi Daczko, both from than 800 telephone inquiries from patients, Ohio, were thrilled to announce family members, healthcare providers and that Joe took on the Boston others in FY 2008. Marathon in March in the name • Personal responses were sent to 1,000 email of all people suffering from messages that came into the ICA web site. IC. Angi, who has IC, noted • Approximately 1,800 individuals were matched with IC healthcare specialists through the ICA that Joe ran the race wearing a Healthcare Provider Registry. t-shirt emblazoned with “This • 100 people with IC received personalized pain stops. Theirs doesn’t.” assistance from the ICA in navigating the disability system. Connecticut resident Michelle Noehren, whose younger sister Sponsor patient forums Debra struggles with IC and several other medical issues, For two decades, the ICA has sponsored regional patient forums, featuring IC healthcare specialists, ran the Delaware Marathon and providing education, information and support. in May in honor of her sister. In 2008, we sponsored three patient forums - in Michelle raised nearly $500.00 Phoenix, Arizona; Tampa, Florida; and Tulsa, during her marathon training Oklahoma. Approximately 375 IC patients and their which she donated to the ICA families attended these forums to learn from top IC in Debra’s name. experts. Those presenting included ICA Board and Medical Advisory Board members, Robert Evans, MD, and Daniel Brookoff, MD, PhD; and IC expert John Forrest. These all day, interactive affairs also provided a great opportunity for patients and their families to network and gain support. “I just want to say THANK YOU for such an informative Provide 24/7 access to website! I found your website health information and diagnosed myself. Thank you, thank you, thank you. Thousands of people with IC, as well as their friends and loved ones, continue to rely on and trust the I feel like FINALLY I have ICA’s communication tools: the ICA Update quarterly some hope!” SSB magazine, Café ICA online monthly news digest, and the ICA website www.ichelp.org.

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Ensure Sound Fiscal Practices The following is a summary of the financial statements incorporated in the annual audit report issued by Councilor, Buchanan & Mitchell, P.C. for the year ended September 30, 2008. The complete financial statements and notes are available upon request from ICA.

Statement of financial position - september 30, 2008 Assets Liabilities and net assets Current Assets Current Liabilities Cash and Cash Equivalents $753,883 Accounts Payable and Accrued Expenses $64,772 Certificates of Deposit 52,270 Deferred Lease Liability 3,342 Marketable Securities 20,009 Accrued Wages Payable 27,141 Accounts Receivable 55,695 Accrued Vacation Payable 18,094 Promise to Give 2,500 Payroll Taxes and Other Payables 3,523 Prepaid Expenses 27,244 Total Current Liabilities $116,872 Inventory 143,605 Total Current Assets $1,055,206 Net Assets Unrestricted $618,722 Property and Equipment Temporary Restricted 357,338 Furniture and Office Equipment $30,662 Total Net Assets 976,060 Software 51,565 Total Liabilities and Net Assets $1,092,932 82,227 Less Accumulated Depreciation and Amortization (49,100) Net Property and Equipment $33,127

Other Asstets Deposits $4,599 Total Assets $1,092,932

Statement of activities - for the year ended september 30, 2008 Temporarily Support and Revenues Unrestricted Restricted Total General Donations $476,741 - $476,741 Membership / Subscriptions $167,917 - $167,917 Sale of Resource Materials $164,999 - $164,999 Administrative Cost Revenue $40,611 - $40,611 Research Fees $7,268 - $7,268 Forums $7,964 - $7,964 Combined Federal Campaign $25,072 - $25,072 Other Restricted Donations Research and Research Related - $49,843 $49,843 Public Health Education - $109,694 $109,694 Patient Services - $511,050 $511,050 Professional Health Education and Training - $227,622 $227,622 Other - $6,370 $6,370 Net Assets Released from Restrictions $918,406 ($918,406) - Total Support and Revenues $1,808,978 ($13,827) $1,795,151

Program Services Expenses Research $148,484 - $148,484 Public Health Education $198,836 - $198,836 Professional Health Education and Training $415,933 - $415,933 Patient Services $708,868 - $708,868 Total Program Services Expenses $1,472,121 - $1,472,121

Supporting Services Expenses General Administration $193,622 - $193,622 Fund-Raising $167,153 - $167,153 Total Supporting Services Expenses $360,775 - $360,775 Total Expenses $1,832,896 - $1,832,896

Changes in Net Assets Before Investment Income ($23,918) ($13,827) ($37,745) Investment Income (Loss) ($4,086) $4,967 $881

Changes in Net Assets ($28,004) ($8,860) ($36,864) Net Assets at Beginning of Year $646,726 $366,198 $1,012,924

Net Assets at End of Year $618,722 $357,338 $976,060 17 18 Y our GenerosityMakesItHappen

Canada Kimberley Rouse, this disease.” assist andinformon Generositytime andenergy to that havegiventheir wonderful individuals enough tothe stress mygratitude questions. Icannot answers tomy support andyour have accesstoyour I amsogratefulthat that Igetfrom email. support isphenomenal for me,plusthe been veryinformative one yearagoandithas website approximately informed meofyour “My familydoctor Fidelity CharitableGiftFund Fred R.Fernandez&Irma R. Funding Trust Citigroup GlobalImpact Charlesmead Foundation BP Fabricof America Fund Boeing Charitable Trust Louis BerkowitzFamily Astellas USA Foundation Amador CommunityFoundation further achieveitsmission. generosity allowstheICA to Thanks tothosewhose Trusts Associations & Foundations, September 30,2008). (October 1,2007through Ending September30,2008 received forFiscal Year The followinggiftswere throughout FY2008. all whomadegenerousgifts Our sincerestgratitudeto they maybe. may live,nomatterhowdisabled have it,nomatterwhereheorshe IC patientwhoneedshelpcan peak strength,sothatevery program andservicesoperatingat Donations helpustokeep foundations andcorporations. individuals, aswell generosity andvisionof made possiblethroughthe The workoftheICA is Rodriguez Foundation,Inc. Foundation, Inc. Clorox CompanyFoundation Carmax Foundation AIG MatchingGrantsProgram and GivingClubs. the ICA through MatchingGifts employers alikewhosupport Thanks toemployeesand Gifts &ivingClubs Employer Matching through them. those whogavetotheICA online givingsitesandto Our thankstothefollowing for Giving Online Networks Vanguard Charitable St. LouisCommunityFoundation Schwab Fundfor PIMCO Foundation Karen &Christopher Pathways MainStreetUnited Oklahoma City MGM Mirage Voice Foundation Medtronic Foundation Samuel &Rebecca Jewish Community High FiveFoundation Hannah Foundation Greater HoustonCommunity Foundation fortheJewish Endowment Program Charitable Giving Payne Foundation Methodist Church Community Foundation Kardon Foundation Endowment Fund Foundation Community Illinois Tool Works Foundation Artists Melissa Bowerman Merck Partnership for Giving Our thanks to the artists who Mike & Susan Brown Microsoft Giving Campaign donated their time and talents to Anne Cheng Pfizer Foundation Matching the ICA Update magazine. George & Phyllis Cohen Gifts Program Joan Dietz Prudential Foundation Melynn Allen Dr. Ragi Doggweiler Matching Gifts Dr. Diana Dunn Mary & Bruce Donald Wachovia Foundation Matching Janet Kozachek Dr. Diana Dunn Gifts Program Dr. Robert Evans Individual Contributors Dr. Cynthia & Mr. Gary Fineman Federal Agencies Don & Elzina Forbes Federal Agencies help the ICA to Gi f t s o f $50,000 o r g r e a t e r : Eleanor Grant increase awareness about IC. Special Estate of James & Mary Virginia Gross thanks to the: Coyle Franklin John R. Hannah & Allison Hannah Brady Centers for Disease Control Gi f t s o f $10,000 o r g r e a t e r : Jane Hebden and Prevention Diane Brown Shelley Johnson National Institutes of Health Daniel & Susan Guggenheim Dr. David Kaufman Lita Schwartzberg his wife, Marjorie, Corporations Eric & Barbara Zarnikow Dr. Susan Keay The ICA is grateful for the Lynn Schor Suzanne Kitzman ongoing support that we receive from Mary Korbin our corporate sponsors. Gi f t s o f $5,000 t o $9,999: Kaye Kreutzfeldt Dorothy Banner Elitza Lear AkPharma Inc. Jean & Jim Boak Laura Leprino Alaven Pharmaceutical LLC Lynn Halseth Dr. Monica Liebert Allergen Gerry & Jackie Kaminsky John & Colleen Lohrer Astra Tech Inc. Sean & Shelley Kardon Teresa McCoy Desert Harvest Inc. Dr. Phillip Mosbaugh Veda “Mickie” Mearns Farr Laboratories, LLC Dr. John Warren Dr. & Mrs. Hugh & Melanie Northcutt Kingdon Capital Dr. Kristene Whitmore Jeffrey & Ellen Paul Management, LLC Dr. Christopher Payne Medtronic Inc. Gi f t s o f $1,000 t o $4,999: Marcia Perlmutter Ortho-McNeil Janssen Blaine A. & Laverne S. Briggs Dr. Susan Presberg-Greene Scientific Affairs, LLC Jane Bardin Brent Ramenofsky Ortho-McNeil Pharmaceutical Dr. Teresa Beam Sidney & Phyllis Rodbell Pfizer, Inc. Dr. Kathy Beck Patricia Rowe Taiho Pharmaceutical Co., Ltd. Catherine Beckley Mona Schlossberg Uroplasty Inc. Brenda Black Dr. David Stout Zymetry, Inc. Dr. Martha Boone Neal Thompson Carolyn Bower Richard Tull

19 20 Y our GenerosityMakesItHappen Judy Lipham Teresa Lim Carolyn Lawrence Marguerite Landry Donna Kroschel Eleanor Kilberger Katharine Kenny Tom &MaryKaszuba Martha Johnson Ethan Jacobs Matt Hazzard Laura Hawkins Elinor Greenberg Barbara &RobertGordon Kara &SteveGoldman Carol Gold April Franzen Edith Fisher Lana Fayman David &BettyFarrell Samira Elfiky Mildred Dunn Melissa &EdDiamond Mr. &Mrs. W.P. Denison, Jr. Dr. GregoryDavis Gloria Christal Janet Carter Cynthia Carter Lilian Camio Jeffrey Borofsky Linda Bolin Bianca Bellesi Judy Beegle Dr. GailBarouh Margaret Anderson Chastity &Michael Alonzo Lesa Agee G Brenda Wislar Michele Weissman s t f i

Support f o $500 o t $999: Boni Weinstein Donn &Sharon Weinberg Kathy Weber-Harding Mr. &Mrs.Frank Vetter Chuck Van Zeeland Elizabeth Thompson Dr. Barbara Thomason Brent Terry Jeanne Scott Phyllis Schwartz Marianne Schuster Marilynn Schreibstein Minna Schrag Carl Scarabelli Pamela Savarese Risha &PaulSamuelson Laura Russ Sharon Rubin Laurence Riordan Jean Renard Susan &MichaelReif Eugenie Rehak Kathryn Pryor Susan Prestera Dr. JackPresberg Victoria Preis Lynn Pinto Randy Pew John Perloff Kenneth Paylor Patricia Patrick Claribel Parker Nancy NowickKauk Dr. PamelaMorrison Sheila Moore Dr. RobertMoldwin Nancy Meller Mr. &Mrs.DonaldMead Dr. RobertMayer Scott &MelissaMartin Norma Lovejoy Elizabeth Kaye Charles Kastigar Kathie Josephson Laura Jones Karen Jackson Cameron Hoover Nancy Hartsburg Maarit Harp Paul &MarilynHalvor Phyllis Greenberger Linda Graff Myrna Goldman Betsy Gardner Tammy Frederiksen Alexis Flach Peter Drumm Mr. &Mrs.J.EverittDrew Claire Doucette Deborah Donahue Linda DeLorenzo Doreen DeBliek Carol Davis Teri Lynn Cooper Don Cassidy Clinton Carroll,Jr. Nancy Bozeman Arlene Blaker Annette Bird Frances Beyer Sara Bershtel Janice Batlowski Kimberlee Armengol Elizabeth Aralia Margaret Anteau Stella Alex Arturo Alba Gifts of$250to$499: Fran Zupan Vivian ZeikLeonard Paula Whelan Marcella Knabe Sally Williams Anne Barrett Jeanne Lamie Dr. & Mrs. Naoki & Tomoko Robert Barrick Jack Larabee Yoshimura Shirley Bartholomew Florence Lechner Gloria Zavala Margaret Bartlett Sharon Lipham Diane Zentmyer Ronald & Christine Bastian Helen Maggard Kathy Batham Eileen Marshall Gifts of $100 to $249: Dona Bauer Melissa Masch Ann Abel Linda Bayha Barbara Melby Kenneth Adler Elizabeth Beal Gery Meyer Dana Akins Karen Beattie Donna Montosa Sandy Alferness Lissa Beaty Phyllis Munczek Judith Allen Virginia Becker Jill Murrow Patricia Amman Roseanne Beidler Lisa Myers Joanna Anderson Sharon Bell Rachel Nanney Mary Ellen Andrew Cynthia Benavides Linda Nuccitelli Lynda Andrews Adrienne Benner Patricia Pannill Dr. Stanley Antolak, Jr. Sandy Benson E. Wayne Parke Dr. & Mrs. Ronald Armengol Helen Berger Evelyn Pazik Ginger Armstrong Sally Berman Sharon Powers Sara Armstrong Karen Berney Ida Rouget Sandra Armstrong John Paul Berry Rita Sagehorn Cynthia Arneson Mary Ann Berry Pat Schaffer Cathleen Arnold Patti Bertellotti Hazel Schlosser Lance Atkins Phyllis Beshears Mr. & Mrs. Peter Seldin Madelyn Atkinson Kaye Beth Max Shulman Elyse Auerbach Frances Binnicker Melinda Simon Karen Aversa Anne Adams Bishop Malethia Smith Dora Avila Paul Bitler Leona Snell Maunette Bacon Joann Bitzer Bridget Sorace Linda Baek Margaret Blair Janet Steele Betty Bagdasarian Susan Blehart Gerri Steinbaugh Vivian Bailey Lark Blodgett Dr. Martin & Kathy Stern Marilyn Baldwin Bruce Boer Anne Terhune David Barany Susan Bolton Dorothy Tua Eleanor Barber Helen Bolton Frances Tully Brenda Barber Denise Bonn Karen Ullo Sherry Bardack Ruth Bowers Mario Venta Susan Barker-Fisher Barbara Bowman Dr. John Verdon, Jr. Larry Barnett Mary Ann Boyles Gail Weingart-Bunes Barbara Barnett Maureen Brandes Thomas Whittaker Jo Barnhart Joanne Britton

21 22 Y our GenerosityMakesItHappen

Sue Cheek Dottie Chase J. C.Chandler Geneva Cecil Marguritta Cauley InvolvementLorraine Cassini Josephine Cashan Elaine Cash Gloria Casey John Carroll Diana Carlson Greg Carhart Crystal Carey Hillel Caplan Elaine Cantrell Sandra Callahan Elizabeth Caldwell Helen Caffrey Marilyn Cadieux Cherie Byra Harry Byars Charles Butrick,MD Jane Butler Marcia Burris Rosanne Burns Valerie Burns Harriet Burke Barbara Burgett Robert Burdett Margaret Bullock Jacob Buehler Breda Buckley Sally Bryga Betty Bryant Martha Browning Virginia Brown Chloeann Brown Sylvia Brown Bonnie RaeBrown Joanne Brophy Barbara Brizzolara Mary Davis Mary Anne Davis Jane Davis Harriet David Sandy Davenport Maureen Daugherty-Rosenbaum Vera Dastur Rosanne Dann Meghan Dahl Joe & Angela Daczko Rebecca Cutter DeEtta Cunningham Tom Crowe Becky Croell Mary Crane Eileen Cowin Sandra Cowen Jim Covington Tate &KeiraCoverdale Armando &ConsueloCorripio Vanessa Corrallo Dolores Corona Jill Coombes Dr. Andrew Cook Dorothy Cook Patricia Cook Peggy Cook Polly JoCook Diane Cook Peaches Conway Jana Coler Sandra Coleman Risa Cohen Patricia Coburn-Hintze Donna Coble Holly Clark Vanlandingham Jane Clark Hulya Citak Constance Church-Brady Barbara Childs Ann Chesnut Barb Elgersma Connie Eisenstat Nada Eischen Marianne Egolf Julie Egeland Edna MariaEdwards Harold Eckhardt Lynn Eastburn Linda Earps Dianne Eakin Diana Dymacek Cheryl Dunn Shirley Dunn Rebecca Dunn Melanie Dubs Susan Drumm Kathleen Driscoll Ethel Drew Wade Dow Kathryn Dougherty Connal Dorsey Wanda Donley Paul Dixon Charles Dipzinski Mary Ann Dinkins Debra DiLorenzo Joan Dick Arla Deycous Rita Deveny Christine Destro Martha DePrisco Mary BethDeNiro Denise DenHerder Mildred Demey Kathy Deimerly La FernDeeter Cynthia DeBoard Linda DeBlasio Carol DeMan Marilyn Dawson Raymond Dawson Dr. Michael Ellen William Roy Gafford Wayne Haegele Janet Elliott Sandra Gamble Debbie Hagman Elsie Ellis Jimmie Garner Jane Hall Linda Ellmore Susan Gates David Hall Dr. Jane Elsten John Gau Audrey Hamilton Allison Equels Maurice Gaudet III Bonnie Hana Jerry Fakehany Charles Gaydos LaVelle Haney Barbara Fandozzi Arshag Gechijian Brenda Hanson Gary Farquharson Meribeth Geiger Dr. Paula Harbison Carol Farrar Jayne Gershkowitz Angela Hargrove Noelle Farris Linda Gerstley Lee Harizanoff F. Joseph Feely, III Joanne Gialdini Penelope Harris Brigid Fejes Kimberley Gibson Dr. Jane Harris Kenneth & JoAnne Felsburg Maureen Gilbert Diane Hartig Christine Ferguson Joe Gill Lisa Haughey Dr. Doris Ferleger-Halbert Edie Gilmore Patti Hayden Ann Ferris Carol Glass Chinita Hayden Pamela Fife Carolyn Glass Elesia Heimbecker Patricia Fischer Edith Godar Lisa Heller Judy Fisher Dorothy Gogos Carolyn Kaye Hepburn Betty Fisher Ruth Gold Therese Heskamp Evelyn Fithian David Goldman Karen Heyward Courtney Fitzgerald Judith Marx Golub Frances Hill Linda Fitzsimmons Debra Goodman Simone Hils-Seewoester Katie Fix Bonnie Goodrich Elizabeth Himan Janet Fletcher Jodi Goodrick Betty Hinken Patricia Flinn Joyce Goodwin Helen Hixson Pamela Fluke Phyllis Gordon Karen Hixson Charlotte Fogel Pearl Goss Mary Hoffman Mr. & Mrs. James Foos Juetta Gould Kathleen Hohn Wendy Foulke Sperry Graham Joann Hollinger Margaret Foulkrod Martha Green Brian Holloway Jean Fox Sue Greer Linda Holmberg Trecia Franks Lacey Greer Neta Holmes Anita Freidenreich Janet Griffin Mary Lou Holt Elaine Friedman James & Peyton Griffin Corrie Hopkins Sharon Froemling Fredi Grove Sharon Horn Joseph Fuller Shirley Gurley Kazuko Horner Joe Fuller Donna Gysler Marian Horsley Susan Fung Cynthia Haase Beth Hough Peggy Furgerson Stanton Hadley Sara Hourihan-Taylor

23 24 Y our GenerosityMakesItHappen

Rae Lynne S.Koivu Carolyn Koerber Sue-Ann Kobatake Jean Koawl Patricia Knight Knight Rev. &Mrs.DwayneFern Ronni Knapp Clara Klugh Jessica Klepchick Janice Klein Melissa Klaassen Sheila Kitt GenerosityNannie KayKirk Sadie Kestner Robert Kerwin Don Keenan Barbara Keeley Luette Keegan Ellen Keegan Sharon Kaz Penny Kavanaugh Katherine Kaufman Leslie Katz Rivian Katz Judy Karpen Jo-Ann Karkenny Shelley Kardon Donna Kaplan Joan Jones Rosita Jones Jeannine Jaykoski Carolyn Jacobs Irwin Jacobs Diane Jacober Karrie Hyde James Hutt Patricia Hunter Linda Hunter Betty Hubele Rose Howard Barb Longsdorf Sonia Lloyd Cynthia Lloyd Dr. Arthur Lipow Alice Lindgren Virginia Liebaert Caryn Levinson James andCheriLeonard Viola Leonard Dorie Leo Bonnie Lenhart Janet Leitch Deirdre Lee Bonnie Lee Honey Lee Nerina Lazaric Donald Lawson Roxane Latt Leslie Larsen Joan Larman Darlene Larin Joe Langnes Robert Lang Burel Lane Jackie Lamprey Margaret Lampman Betty Lamoree James Laidlaw, M.D. Joan Lager Betty Laboz Caryl Label Carolyn LaSpisa Lorene Kundert Elaine Kulakowski Brad Kuhn Barry Krevansky Rebecca Krenke Cindi Krebs Sharon Kratzer Lucy Kostelanetz Dolly Koritzer Sandra Meeks Robert McRoberts Lisa McNally Kathy McKnight Charlotte McKinnon Betty McKinnon Della McGuire Cathleen McGarity Connie McEwen Bonnie McEneaney Gail McDonald Lynnette McDermott Ami McDermond Amy McCoy Dr. NaomiMcCormick Margaret McCormick Gwynne McConkey Adrienne McCalley Donna McCaleb Caren Mazure Marie Matyjaszek Donna Massa-Chappee Louise Mason Peter Masic,Sr. Diane Martin Paul Marczak Margaret Marbella Jennifer Maranchie Patricia Malito Frank Madden Marilyn &BuckMacMurdo Lydia Macauley Robert Lynn Judy Lynch Debbie Luskin Kathleen Lundeen Annette Lumpkin Lorri Lubick Geneva Loyd Nelda Lott Edward Lopatin Nicole Mehall Gabriella Nozik Rose Marie Pollatz Susan Melancon Peggy O’Hanlon Ethel Posner Charlene Mellman Lenore O’Neill Rhonda Powell Suellen Merrill Debbie Oaas Thelma Presnell Carolyn Merriman Nancy Ognanovich Shirley Preyer Connie Metzger Martha Oliphant Keri Procunier McLain Kathy Miedema Shirley Oliver Jerri Prudhomme Mary Joeann Mielke Patricia Oliveri Rosemary Ptachcinski Marie Miksis Linda Olsen John Pugh Patricia Miliano Lorraine Olszewski Patricia Pugsley Barbara Miller Audrey Orlikowski Belinda Pullen Guila Miller Eva Mae Osborn Dr. Jo Anne Pullen Amy Miller Emily Osgood Barbara Purol Mark Miller Susan Oxman Elfriede Quercia Essie Minton Karen Painter Susan Radigan Saurabh Mohan Andrew Palan Theresa Radke Gail Moloney Derek Parker Cheryl Ann Raley Mary Mommsen Ruth Parriott Pam Rathbun Mildred Mooney Faye Parsons Mary Carolyn Ray Karon Moore Ann Parvin Anita Reidy Donald Moore Kim Passalacqua Anita Reynolds Linda Moore Nathalie Pattie Bonnie Rhoades Tom Moore Dr. Robert Patton Herbert Ribner Dorothy Morris Anna Marie Pedersen Barbara Richardson Barbara Mullen Jan Penz Justine Richardson Debbie Mullen Calla Pepmueller Herma Riechel Sylvia Murray Lucretia Perilli Shirley Rieck Gerome Myers Laura Perry Cynthia Riggs-French Trudie Nakamura Elaine Perugini Loretta Rispoli Anne Nash Billie Peterson Susanne Ristagno Linda Nash Mary Pettit Dr. Roger Rives Kay Neilson Maureen Pfeiffer Patricia Robbins Judith Neiman Albert Phillips Judith Robbins Nancy Nicholson Peter Piascik Rachelle Roberts Dr. Patricia Nicol Cathy Pinkston Mark Roberts Graciela Nieto Mr. & Mrs. Vincent Pitetti Val Roberts Mrs. & Mr. Beverly Noehren Donald Plaster Katherine Robinson Peggy Norman William Platt Mary Robinson Margaret Norton Mr. & Mrs. Leo Pluswick Jane Rock Elaine Novak Evelyn Pohlmann Donald Rockwell Vera Noxon Janet Pokrant Rev. Edward Rodgers

25 26 Y our GenerosityMakesItHappen

Monika Scott-Kerce Linda Scott Dan & Amy Schwarzkopf Sandra Schwarz Dr. DeborahSchwartz-Kates Harlee Schwartz Luann Schultz Norma Schnepp Sara Schippers Tammy Schaefer Nancy Scaduto J.W. Sawdy Dr. RichardSauer Gwyneth Satterlee Linda Satchwill Marilu Sapashe Susan Santone Joanne Sandison SupportJesse Sanders Laura Salyer Dorinda Salort-Zaloom Linda R.Salin Karen Sakamoto Marion Sadick Ellen Rundle Betty Rumsey Dorothea Ruliffson Amanda Rud Margaret Roy Robbie Rowlett Ruth Ross Martha Rosenblatt Martha Rose Linda Rose Patricia Root Dorothy Rooney Helen Romano Kimberly Rollins Barbara Rolfs Heidi Rogers Stephanie Rogall Jean Sultemeier Mary R.Sullivan Kathleen Styc Harry Straker Susan Stoudt Ellen Stillman Sue Stiller Christina Stigliano Mary Steiert Marilynn Steffen Katrina Stafford Debra Spencer Susan Spence Emma Snyder Harriet Snider Lori Ann Smoot Karen Smith Nathan Smith Dr. DavidSmith Mr. &Mrs.EdwardSmith Sherri Smith Daniel Smith Glenn Smallwood Daniel Skowronski Shauna Sisson Lori Simpson Betty Simpkins Helen Silverstein Marilyn Sieling Linda Siegel Vivian Shoolman Marcia Sholty Marilyn Shelton Laurie Sheffield Dr. JoelShavin Deanna Shanley Earline Sevin Dr. MarilynSeskin Dorothy Sepa Dr. JoySelak Janice Segard Kathryn Ustler Virginia Upton Dortha Underhill Ralph Tyler Constance Twomley Debra Tutko Karen Turner Darlene Tull Melinda Tucker Carlee Trujillo Michael Trent Treva Traver Nancy Trainor Anita Toth Nedra Tosh Joy Tomasak Leonore Toll Mary Timmons Charles Thornton Gwen Thorn Thomson Financial Cathy Thompson Olga Thomas Mary Thiemann Jamie Thedford Marie P. Thayamballi Sylvia Ternes Linda Tennies Elissa Tempkin Paula Taylor Jan Taylor Lucia Talreja Sharon Szczepanik Pamela Swinford Stephanie Swift Carmel Sweeney Loretta LouSwartzell Barbara Swan Iveta Svalkovska Barbara Summitt Linda Summers Vickie Valentine Barbara Wood Legacy Society Evelyn Vandergrift Joyce Woodruff These individuals have Tina Vargas Mary Woodson informed the ICA that they Paula Vigil Dr. Amy Woolf made or are planning to make Mrs. Pam Vinson Ann Wooten a planned gift such as a Sharon Vitale William Wright bequest in their will, or a gift Lois Vrba Ruth Wright of a trust or annuities: Janet Waggoner Sandra Yeager Shelley Wagoner Rosalind Yewdell Melanie Barton Janice Walden Carole Young Kimberly Billett Catherine Wallace Elizabeth Young Florence Callahan Nancy Walle Janice Young Dottie Chase Linda Wampler Rose Fay Yuspeh Diana Dunn Brandi Warren Werner Zarnikow Gregg Dwyer Renee Washburn Catherine Zelano Patareka Dwyer Sherry Weber Rosa Zimmer Lynn Eastburn Elsie Sue Webster Chris Zorn Carol Froese Bernadette Wegerly Daniel & Susan Guggenheim Lucy Welch Cynthia Haase Dr. Risa Wells Donna Huntington Gina Wendkos Kaye Kreutzfeldt Evelyn Werkman Barbara McCabe Teresa West Chris Mesecher Barbara Ann West Lillian Polisar Betty Westbrook Vicki Ratner Leesa White Bruce Ronda Carolyn White-Krueger Christina Sadar Renee Whitesides Lucille Smock Margaret Whitmore Catherine Watts DeLana Wicker Helene & Jilla Wolsey Nancy Williams Cynthia Young-Moreno Anna Williams Phyllis Williamson Monthly Donors Georgia Williamson Kimberlee Armengol Norma Willingham Vivian Bailey Ann Windley Larry Barnett Louise Winnai Catherine Beckley Susan Winter Bianca Bellesi Mary Withrock Patti Bertellotti Ivy Wolfe Kaye Beth Helene & Jilla Wolsey J. Brown

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Your Generosity Makes It Happen

Rosanne Burns Jeanie McKamey Mario Venta Hillel Caplan Veda “Mickie” Mearns Lois Vrba Don Cassidy Nicole Mehall Shelley Wagoner Lorraine Cassini Margery Milmore Catherine Wallace Jana Coler Sonja Morgan Tammy Ward Sandra Cowen Phyllis Munczek Teresa West Carol Davis Lisa Myers Frances Weston Roberta De Simone Dr. Patricia Nicol Paula Whelan Doreen DeBliek Graciela Nieto Leesa White Kathy Deimerly Nola Okerson DeLana Wicker Marianne Egolf Linda Olsen Phyllis Williamson Pamela Fife Kenneth Paylor Dr. & Mrs. Naoki & Tomoko Nicole Fleischer Lucretia Perilli Yoshimura Joe Gill Elaine Perugini Rosa Zimmer Barbara Gordon Randy Pew Jackie Hansen Peter Piascik Brenda Hanson Dr. Susan Presberg-Greene Lee Harizanoff Dr. Vicki Ratner Laura Hawkins Loretta Rispoli Patti Hayden Rachelle Roberts Karen Heyward Kimberly Rollins Elizabeth Himan Patricia Root Julianne Hirsh Frances Rosevally Karen Hixson Dorothea Ruliffson Diane Jacober Ellen Rundle Carolyn Jacobs Susan Santone Ethan Jacobs Mary Ann Schneider Ellen Keegan Minna Schrag Dr. Teresa Kelly Marilynn Schreibstein Rae Lynne S. Koivu Marianne Schuster Mary Korbin Jeanne Scott Caryl Label Cheryl Shive Robert Lang Lori Simpson Bonnie Lee Susan Spence Janet Leitch John Strube

Involvement Donald Lipscomb Linda Taylor Sonia Lloyd Barbara Thomason, PhD Cynthia Lloyd Gwen Thorn Hannelore Loomis Darlene Tull Earl McClary Debra Tutko Teresa McCoy Karen Ullo OUR TEAM

Boards Paula Whelan Fred M. Howard, MS, MD ICA Patient Advocate University of Rochester The ICA’s Board of Directors and Medical Advisory Board Barbara Zarnikow David Kaufman, MD members donate both their time ICA Patient Advocate Columbia College of Physicians and their talents. Their support & Surgeons is essential to the ICA achieving Medical mission impact. Advisory Board Susan Keay, MD, PhD University of Maryland School Board of Directors Board Co-Chairs of Medicine Alan Wein, MD Board Co-Chairs University of Pennsylvania Robert Moldwin, MD Minna Schrag, Esq. Health System The Smith Institute for Urology Proskauer Rose LLP and Long Island Jewish (Partner-retired) Philip M. Hanno, MD Medical Center University of Pennsylvania Marianne Schuster Health System Diane Newman, RN, MSN ICA Patient Advocate University of Pennsylvania Board Members Medical Center Treasurer Daniel Brookoff, MD, PhD Eric Zarnikow, MBA, CPA Center for Medical Pain Christopher K. Payne, MD Senior Executive, Federal Management Stanford University School Government of Medicine David A. Burks, MD Board Members Henry Ford Hospital John W. Warren, MD Robert Evans, MD University of Maryland School Moses Cone Health System Daniel B. Carr of Medicine Javelin Pharmaceuticals, Inc. Rhonda Garrett and Tufts-New England Ursula Wesselmann, MD, PhD ICA Patient Advocate Medical Center University of Alabama at Birmingham Phyllis Greenberger, Toby Chai, MD MSW Society for Women’s University of Maryland Kristene E. Whitmore, MD Health Research Medical Center Drexel University College of Medicine Blake Paterson, MD Ragi Doggweiler, MD Alba Therapeutics Corporation University of Tennessee, Special Consultant (Founder) Knoxville Monica Liebert, PhD University of Michigan F. Neal Thompson, CFP Robert J. Evans, MD Financial Services Consultants Moses Cone Health System (Founder and President)

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OUR TEAM

Staff, Consultants, ICA Volunteer National and National Patient Support Advocates Patient Support Sandra Banish Advocates Bonnie Hana Kimberly Kime Staff, consultants, and Russell Massey volunteers perform the daily work Teresa McCoy of the ICA—providing a listening Merri and Gerald McNeil ear for members and others with Kenneth Paylor IC, responding to public Fran Russell inquiries, fulfilling publication Jareena Somer orders, producing health Nancy Williams information materials, exhibiting Jackie Wilson and speaking at medical Jack Yarrington meetings, serving on expert panels, organizing patient forums, and more! Liaisons to National Institutes of Health Executive Director Leroy M. Nyberg, MD, PhD Barbara Gordon, MBA, RD Division of Kidney, Urologic, and Hematologic Diseases, NIDDK Staff Penny Allen Chris Mullins, PhD Paula Carroll Basic Cell Biology Program, Carolyn Coogan NIDDK Sonja Grayson Debi Kerr Founder and Nicole Mehall President Emeritus Lucretia Perilli Vicki Ratner, MD Linda Salin Marilynn Schreibstein Annemarie Steiner Deanne Zwerk

Consultants Mike Greenwell, Fleishman-Hillard Jason Knott, KeltonTech Libby Mullin, Mullin Strategies Deborah Lovin, Lovin & Assoc. The ICA does not engage in the practice of medicine. The association is not a medical authority, nor does it claim to have medical knowledge. In all cases, the ICA recommends that you consult your own physician regarding any course of treatment or medication.

ALL INFORMATION COPYRIGHT © 2009 Interstitial Cystitis Association, Rockville, MD All rights reserved. Printed on Recycled Paper.

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31 Interstitial Cystitis Association

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Web Site: www.ichelp.org

E-mail: [email protected]

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