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Event MC/Facilitator - Jill Osborne, MA - President & Founder of the Interstitial Cystitis Network

Jill Osborne (CA) was the first IC patient to recognize the potential for online support for IC patients. She developed IC at the age of 32 after a chemical accident and began a support group just three months after her diagnosis (IC-Redwood Empire). While running that group, she realized that the patients who needed support the most were those who were too ill to leave their homes, much less get in a car and drive to meeting. Seeking to create a new, innovative resource, she began the first on-line bladder support groups on the web in 1994 and founded the Interstitial Cystitis Network (ICN) in 1995. The ICN is the largest and most comprehensive resource for IC/PBS patients on the web, now serving more than 300,000 patients a month.

MAY 2006

May 2 – Dr. Christopher Jayne – Intimacy and IC (Completed)

One of the most frustrating challenges facing many IC patients is the difficult with intimacy and sexual relations which, for many, can trigger short or long term flares. There is hope, however. Dr. Christopher Jayne (TX), founder of The Center for Women's Sexual Health will offer a direct and practical discussion of sex and IC and how you, the IC patient, can help maintain a satisfying and comfortable sex life. Dr. Jayne is also a board member of ICU-Texas, the non-profit that provides education and support for patients in the Texas area. Attendance: 70 patients

May 16 – Dan Brookoff, MD – Practical Pain Management For IC Patients (Completed)

Dr. Daniel Brookoff (CO) has long been considered the leading pain specialist for interstitial cystitis in the United States. A member of the medical advisory board of the ICA, he has advocated for the compassionate care of IC patients for the past twenty years. From the use of pain medications to neurostimulators, he will share the latest information that we have on pain management strategies. He will also be sharing his thoughts on the use of opiates in the treatment of IC pain, as well as a clarification of tolerances vs. addiction. Dr. Brookoff is known for his jovial and encouraging perspective on IC and will be provide a lively discussion for all. Attendance: 120 patients

May 30 – Gaye Sandler – “Why does exercise hurt? Exercising safely for interstitial cystitis and pelvic floor patients.” (Completed)

IC patients often struggle with exercise, particularly activities that jar the bladder or pelvis, such as running or aerobics. Thus, many of us struggle with adjusting our normal workout routines so that we don't irritate our bladders. Ms. Sandler will be discussing the pros and cons of yoga, pilates and other popular exercise methods and will give you many exercise suggestions!  The author of two popular books "Patient To Patient: Managing IC & Related Conditions" and “Stretch Into Better Shape”, Ms. Sandler (LA) is a specialist in Aston-Patterning movement and muscle re-education. Attendance: 67 patients

JUNE 2006

June 6 - Dr. Matt Rosenberg - Early Diagnosis & Recognition of IC (Completed)

As an internist, Dr. Matt Rosenberg was the first in the country to assess the women in his practice over a given year to determine if they had symptoms of IC. His results were recently published in the Journal of Urology where he reported that 12% may have signs of IC. This staggering statistic validates what others have believed for some time... that IC/PBS may be far more widespread than previous estimates. An outstanding spokesperson for his patients and for the IC community, Dr. Rosenberg was featured in the Healthy Body, Healthy Mind PBS Documentary on IC this Spring. Join us for a lively fascinating conversation with this true visionary.

June 20 – Heather Van Vorous - Irritable Bowel Syndrome and IC (Completed)

Irritable bowel syndrome is one of the most common related conditions that IC patients struggle with. Our guest speaker, Heather Von Vorous (WA), is the author of "First Year: IBS" and "Eating for IBS," two hugely successful patient education books. Contrary to what many believe, eating for IBS does not mean deprivation, never going to restaurants, boring food, or an unhealthily limited diet. It does mean learning to eat safely by realizing how different foods physically affect the GI tract, and how the same foods can help or hurt both diarrhea AND constipation, as well as bloating, gas (flatulence), nausea, and painful abdominal cramps. She will be sharing great tips for managing IBS, how to avoid triggering an IBS attack and the role of various foods. Heather hosts a weekly cooking show called "Heather Cooks," which focuses on fabulous foods for good digestive health.

June 27* – Dr. Barbara Shorter, RD - Diet Part One - New Research Shows That Diet Does Make A Difference! (Completed)

IC researchers Dr. Barbara Shorter, Dr. Robert Moldwin and Dr. Leslie Kushner (NY) recently completed the first major research study which proves that diet can exacerbate our bladder symptoms. Representing this dynamic research team, Dr. Barbara shorter will be sharing their results that will be presented at the May 2006 AUA Conference. This is the first of two lectures on the IC diet this summer. Dr. Shorter RD, CDN is the Director Didactic Program in Dietetics, Department of Nutrition, CW Post/ Long Island University. She is also an IC patient!

JULY 2006

July 11 – Julie Beyer, RD – Vitamins, Supplements & the IC Diet (Completed)

In the second half of our IC diet series, registered dietitian Julie Beyer will be discussing the IC diet in depth, including suggestions on IC friendly foods and meals that are nutritionally sound. She will also be discussing the risk of using vitamins and supplements. Ms. Beyer was the first dietitian to develop a CME on interstitial cystitis for other dietitians. A frequent speaker at support groups throughout the United States, she is also the author of "Confident Choices: Customizing The Interstitial Cystitis Diet", the newest book on diet and IC. She also provides nutritional consulting for patients throughout the USA, as well as her own internet based newsletter. We're delighted to feature Julie who has, for years, been helping patients with diet in the IC Network support Forums.

July 25 – An Evening with Dr. Robert Moldwin, MD, FACS - New, emerging therapies for Interstititial Cystitis (Completed)

One of the most popular, affable and encouraging speakers at national events, Dr. Robert Moldwin (NY) made a name for himself by writing the #1 best selling book on IC, "The Interstitial Cystitis Survival Guide." Dr. Moldwin is Director of the Chronic Pelvic Pain Center for the North Shore- LIJ Health System. He is also Associate Professor of Clinical Urology at Albert Einstein College of Medicine in New York City.  Dr. Moldwin often serves as an advocate and expert consultant, lecturing to audiences of colleagues, patients and members of the media on such topics as incontinence in men and women, urological health, interstitial cystitis and pelvic disorders.  Media hits include CNN, CBS News, Woman's Day, Newsday, Oxygen, Men's Health, Self Magazine and Ladies Home Journal.   

AUGUST 2006

August 22, 2006 - Elizabeth "Isa" Hererra, PT "Pelvic Floor Dysfunction: A Comprehensive Review of Therapy and Self-Care Strategies" (Completed)

Pelvic floor dysfunction has become such a common problem found in IC & pelvic pain patients that most urology clinics and specialists now provide muscle assessments and physical therapy referrals, often done in conjunction with bladder therapies. Urologists have long described the pelvic floor muscles of some IC patients as being so tight that they feel like taut rubber bands, as well as painful trigger points.

The good news is that pelvic floor dysfunction is treatable. The Clinical Director of Renew Physical Therapy (NYC, NY), Isa Hererra specializes in the treatment of pelvic floor dysfunction (PFD) and pelvic pain disorders. She will provide a practical description of PFD symptoms, how she assesses and treats patients and, most importantly, will review strategies that you can perform at home to help you manage your PFD. This is a must attend for all IC patients! To ignore the muscles while only treating the bladder could dramatically delay your progress.

Suggested Participants - IC patients, friends and family members

SEPTEMBER 2006

September 19– Molly Glidden & Gaye Sandler  “Top Ten Tips for Maintaining For Favorite Relationships After A Diagnosis of IC”

Despite nearly being derailed by Hurricane Katrina, Molly Glidden & Gaye Sandler have finished the newest IC book “Please Understand: The Interstitial Cystitis Guide For Partners.” Its focus is family relationships, how to maintain them, how to nurture them and how to avoid the pitfalls that can derail many IC couples! In this presentation, they will share their top tips for helping relationships survive the daily struggles of life with IC. Molly Glidden is based in Boston and has been the IC Support Group leader in the Boston Metrowest area for years. Gaye Sandler is the author of the Patient to Patient: Managing IC & Related Conditions. She and her husband Andrew also write the IC Lifestyles column on the IC Network website.

Suggested Participants - IC patients, friends and family members

September 26 - Conference Finale: Q&A Dr. Jay Burstein, MD - Taking any and all questions you might have about your IC treatment, potential treatments and self care.

Dr. Jay Burstein is one of our favorite IC clinicians in the USA. A urologist practicing at the Dekalb Clinic (Dekalb, IL) he's known for taking the hard, difficult IC cases in his region. He passionately advocates for the needs of IC patients when working with other care providers. But, for the patient, he is a calm port in the storm of IC. From diagnosis to therapies, pelvic floor dysfunction to managing severe IC flares, he has a wealth of information to share. Join us for a delightful evening with this true IC hero!

Suggested Participants - IC patients, friends and family members

 

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The 2006 IC & PBS On-line Patient Conference
A Production of the Interstitial Cystitis Network

PO Box 2159, Healdsburg, CALIFORNIA USA 95409
Sales: (707)433-0413 - Patient Help Line: (707)538.9442
Fax: 707.538.9444