Navigating IC/BPS: Conversations with Experts
Build your knowledge of interstitial cystitis/bladder pain syndrome (IC/BPS) through the ICA's webinar series.
Navigating IC/BPS: Conversations with Experts
The Interstitial Cystitis Association (ICA) webinar series: Navigating IC/BPS: Conversations with Experts aims to equip individuals with the latest knowledge, insights, and groundbreaking information to help empower people living with interstitial cystitis/bladder pain syndrome (IC/BPS).
We are excited to invite you to join the series that promises to cover a wide range of topics, including the latest in IC/BPS research, physical therapy, diet, mental health, self-care, and much more! The series will feature some of the industry's most prominent thought leaders, experts, and practitioners. Through these webinars, we intend to facilitate interactive and engaging conversations, share best practices, and actionable strategies that will help people living with IC/BPS.
These webinars will be:
- unique topics and speakers for each webinar
- kept small in size to offer more intimate conversations
- heavily focused on Q&A
- participants may ask questions directly to the speaker via video and/or chat
- recorded for viewing by paid participants only (recordings will be emailed within a week of each webinar)
- an investment in your health
Registration fee is a minimum donation of $25.
Join us to gain valuable insights and perspectives and participate in the Q&A session.
Featured Speakers
Join us for on August 8th at 12:00pm ET!
Speaker: Robert J. Echenberg, MD, FACOG
Topic: PBS/IC in the Context of Chronic Regional Pelvic and Genital Pain
Dr. Robert Echenberg did his undergraduate work at Brown University, medical training at Jefferson Medical College, and his residency in Obstetrics and Gynecology at the University of Michigan Medical Center. He began private practice in Bethlehem, PA in the early 1970s. Soon after board certification, he realized much of what he needed to know concerning women’s health had not been taught in those excellent programs.
Aside from his comprehensive OB/GYN routine medical and surgical care of women, the first 35 years of his career in large part was devoted to advocating for women and their families by working at local, regional, and national levels to advance the science and art of patient-centered care for all aspects of pregnancy and birthing choices, counseling and aiding couples with sexual intimacy issues, establishing programs to support families through pregnancy loss and developing support for decision making regarding seriously ill newborns.
His interest in chronic pain began in 2001 while developing a hospital-based program designed to create a non-surgical approach to the treatment of chronic pelvic pain. He soon joined the International Association for the Study of Pain, started reading scientific journals on pain, attended numerous pain-related conferences and seminars, and became actively involved in the International Pelvic Pain Society, serving for a year on its Board of Directors.
Dr. Echenberg’s passion for patient advocacy and integrative care in women’s health continued with his creation in 2006 of the first privately owned pain management practice specializing in the assessment, diagnosis, and treatment of chronic pelvic, genital, and sexual pain disorders. Through his website, www.TheEchenbergInstitute.com both women and men continue to reach out to him worldwide. They are all suffering from conditions related to persistent pain in the pelvic region. His expertise in developing a model of care based on the most recent evidence-based protocols applying neuroscience in a bio-psychosocial non-surgical approach has led to successful outcomes for over 2200 patients from 40 states and 18 foreign countries. Over the past decade, he has become one of the most sought-after practitioners in the world for conditions such as Interstitial Cystitis, Pudendal and other pelvic Neuralgias, Vulvodynia, Vestibulodynia, Hypertonic Pelvic Floor Dysfunction, and the spectrum of genital hyper-arousal disorders ranging from Restless Genital Syndrome to Persistent Genital Arousal Disorder. (RGS/PGAD)
Echenberg strongly believes that institutional changes in medical education and awareness among younger people will eventually allow for much earlier diagnosis and prevention of end-stage chronic pelvic pain syndromes. Currently, it is estimated that there are at least 30 million American women (and an unknown number of men) suffering from combinations of these disorders.
Persistent painful symptoms in the genital region are not taken seriously by most healthcare systems around the world. It is educationally and clinically the “invisible” part of the body. Dr. Echenberg’s goal now is to help “pass forward” his decades of clinical experience and knowledge of these conditions
Past Webinars
Join us for on July 18th at 1:00pm ET!
Speaker: Christin Veasley
Topic: IC/BPS & Chronic Overlapping Pain Conditions
Since Christin developed chronic pain after a near-fatal accident in her teens, she’s worked to accelerate rigorous pain research and the translation of research findings into meaningful change for people with chronic pain. She’s been a fervent advocate at the Congressional and federal agency levels to bring about overdue awareness of chronic pain’s impact, the urgent need for an increased federal research investment to address this crisis and the long-overlooked value of including patients as partners in science. Her experiences led her to obtain a science degree, time conducting neuroscience research at Johns Hopkins University and to the pain research advocacy community. She’s served in numerous advisory positions for pain initiatives within federal agencies; academic studies; and collaborative alliances and public-private partnerships working to promote pain research, care and education. Christin co-founded and directs the Chronic Pain Research Alliance (CPRA, an initiative of The TMJ Association) - the nation’s only patient advocacy initiative focused on Chronic Overlapping Pain Conditions (COPCs). With the goal of advancing timely diagnoses and effective evidence-based care for people with chronic pain and COPCs, the CPRA works collaboratively with diverse stakeholders to promote high-caliber COPCs research, translate research findings into educational programs, and drive the development of safe, effective treatments and team-based models of care. She is also the co-chair of the NIH ENGAGE Working Group, charged with developing an agency-wide vision and framework for the inclusion of patients and the public as partners in all NIH-funded clinical research. To promote public awareness and advocate for change, Christin continues to speak openly about the significant impact of pain on her life. She’s authored a variety of scientific, policy and educational materials; presented at numerous medical, research, policy and federal agency meetings; and has been interviewed for print, television and radio media.
Join us for on June 26th at 3:00pm ET!
Speaker: Robert Moldwin, MD, FACS
Topic: Your Journey in Clinical Trials: Expectations and Impact
Discover how your participation in clinical trials directly impacts healthcare advancements in IC/BPS. Shape the future of healthcare by joining us!
Dr. Moldwin is Professor of Urology at the Zucker School of Medicine at Hofstra-Northwell. He is also Director of the Pelvic Pain Treatment Center at The Arthur Smith Institute for Urology of the Northwell Health System and serves on the ICA's Medical Advisory Council. Dr. Moldwin has a national and international reputation as a leader in the field of pelvic pain with special interests in pain syndromes including interstitial cystitis/bladder pain syndrome and chronic prostatitis/chronic pelvic pain syndrome. He has published extensively in peer-reviewed journals some of which have included Cancer, The Journal of Urology, The British Journal of Urology International, The British Medical Journal, Contemporary Urology, and Urology. Dr. Moldwin is the author of the well-received, The Interstitial Cystitis Survival Guide: Your Guide to the Latest Treatment Options and Coping Strategies, the first physician-written book exclusively related to interstitial cystitis, designed to reach an audience comprised of both physicians and patients. He also has recently edited a physician-oriented textbook entitled Urological And Gynaecological Chronic Pelvic Pain.
Claudia King and Amber Carter Taking Control: An IC/BPS Patient's Guide to Healthcare Navigation
Speakers: Claudia King and Amber Carter
Topic: Taking Control: An IC/BPS Patient's Guide to Healthcare Navigation
This webinar intends to empower individuals dealing with IC/BPS by providing essential strategies for navigating the complex healthcare landscape. Featuring ICA Board Members and patients sharing practical tips, it’s a must-attend event for those seeking healthcare navigation guidance.
ICA Vice-Chair, Claudia King was diagnosed with IC in 2005, just one month before her wedding, and she has always turned to the ICA for support and reliable information. Claudia believes that all patients can be advocates, and she takes the opportunity to speak with every new doctor she sees about IC, its symptoms, and its effects. Claudia has a degree in Business Management and Finance from Guilford College and a background in fundraising, marketing, and law enforcement. Claudia is a Confidence Catalyst Coach, helping professional women rise above their trauma and choose courage, so they can fearlessly own their voices, have the careers they want and deserve, and live life with unwavering confidence. She also hosts a podcast called Strong Enough, where guests share inspiring stories of overcoming trauma.
As a long time IC patient, ICA Board Member, Amber Carter has found solace and motivation through engaging with and offering support to other IC patients. She credits the ICA for always providing valuable information and resources needed to navigate this complicated disease, and plans to use the ICA to further knowledge and awareness about IC. Amber has a Bachelors of Science in Legal Studies from the University of Central Florida and has extensive experience working as Paralegal in civil litigation, municipal law, and real property.
Kristi Ninnemann, MA, MPH Breaking the Silence: Talking About Suicidality
Speaker: Kristi Ninnemann, MA, MPH
Topic: Breaking the Silence: Talking About Suicidality
Kristi Ninnemann, MA, MPH, is an adjunct faculty member at Ohio University’s Heritage College of Osteopathic Medicine and an instructor in the Department of Psychology at Cleveland State University. She is a Ph.D. Candidate at Case Western Reserve University (CWRU) and works as a Research Associate in the Department of Psychiatry of a local hospital system. In 1999, Kristi earned a master’s degree in Community Counseling. She worked as a mental health practitioner from 1997-2008, specializing in diagnostic and ER-based crisis assessment. Out of a desire to broaden her impact on the care and treatment of persons with mental illness, Kristi returned to graduate school in 2008. She graduated in 2014 with a Master of Public Health from the Department of Population and Quantitative Health Sciences at CWRU. She will soon graduate with a Ph.D. in Medical Anthropology. Her dissertation research explores how prior and immediate experiences with psychiatry, psychiatric paradigms, and cultural representations of psychiatry and its treatments intersect and shape the experiences of individuals currently receiving electroconvulsive or ketamine therapies. In all her work, she strives to understand patient-identified micro and macro-level factors impacting illness and care outcomes, working to elevate the voices, experiences, and priorities of those with mental illness. Kristi has taught courses and lectured at numerous institutions and is passionate about sharing the complexities and nuances of psychiatric illness, disease, healing, and care with others.
Jill Peters-Gee, MD Understanding the Different Subtypes or Phenotypes of IC/BPS
Join us for on March 27th at 2:00pm ET!
Speaker: Jill Peters-Gee, MD
Topic: Understanding the Different Subtypes or Phenotypes of IC/BPS
Jill M. Peters-Gee, M.D. is a board-certified Urologist with over three decades of experience. A graduate of the University of Michigan Medical School, she was the first female in her residency program, and one of the first 50 board certified Urologists in the country. She has dedicated her career to Women’s health and to the care of patients with Interstitial Cystitis and Bladder Pain Syndrome (IC/BPS). Her expertise is deeply rooted in both clinical practice and research. Since her retirement from clinical practice in 2022, Dr. Peters-Gee’s commitment to the IC/BPS community persists. She continues to contribute, by founding and facilitating the Connecticut IC/BPS support group and she has written her first book “IC Journey to Wellness,” which was published in January 2024. A resident of Connecticut, she enjoys life with her husband, cherishing their roles as parents to four and grandparents to three, while still finding time for travel, volunteering, fly-fishing, and gardening.
Theda Khrestin IC/BPS Advocacy: The Power of Your Voice
Join us for on February 22nd at 12:00pm ET!
Speaker: Theda Khrestin
Topic: IC/BPS Advocacy: The Power of Your Voice
Theda is a seasoned government relations professional. In 2023, Theda founded Trident Strategies, a global public affairs consulting firm, after relocating from Washington, D.C. to Dallas, Texas. From 2018 to 2023, Theda served as Director of Federal and Diplomatic Government Relations for The Coca-Cola Company, focusing on corporate tax, international trade, and foreign policy issues.
Prior to joining Coca-Cola, Theda spent 13 years on Capitol Hill. There she served as Legislative Director for Senator Roger Wicker (MS), managing a legislative team of 13. Theda also served as the Senator's liaison to the Commission on Security and Cooperation in Europe, known as the U.S. Helsinki Commission, while Senator Wicker served as Chairman. Prior to her service to Senator Wicker, Theda served as Deputy Legislative Director and National Security Policy Advisor to Senator Pat Roberts (KS) for 12 years. Her responsibilities included advising the Senator on policy and legislation in the areas of defense, foreign policy, trade, intelligence, and homeland security.
Theda was born and raised in Kansas City, Missouri. She graduated from Fordham University in New York City with degrees in Political Science and History. Afterwards she attended the University of Edinburgh in Scotland where she received her Masters’ degree in Nationalism Studies at the School of Political and Social Sciences. In 2010, Theda graduated from the Naval War College with a Masters’ degree in National Security and Strategic Studies.
Theda and her husband, Igor, live with their two young daughters, Eve and Mirabelle, in Dallas, Texas.
Callie Krajcir, RD The IC Diet: Is it a necessary long-term solution?
Join us for on January 24th at 2:00pm ET!
Speaker: Callie Krajcir, RD
Topic: The IC Diet: Is it a necessary long-term solution?
Callie Krajcir is a Registered Dietitian specializing in interstitial cystitis (IC). She has helped over 100 IC Warriors get relief from their symptoms through diet and lifestyle interventions. Callie has a Bachelor of Science in Nutrition and Dietetics from West Chester University and a Master of Science in Clinical Dietitics from The University of Rhode Island. Callie has struggled with IC her entire life and currently has her symptoms managed through a holistic approach. She has been a Registered Dietitian for 5 years and during that time decided she wanted to help other IC Warriors get relief from their symptoms and improve their quality of life. Callie is the host of IC You, a podcast focused on raising awareness for IC and interviewing various experts in the field. She is also very active on social media platforms like Instagram and Tiktok to share information on IC and raise awareness.
Christopher P. Smith, MD, MBA, MSS My 20+ Year Experience with Botox for Treatment of Chronic Pelvic Pain
Join us for on December 11th at 3:00pm ET!
Speaker: Christopher P. Smith, MD, MBA, MSS
Topic: My 20+ Year Experience with Botox for Treatment of Chronic Pelvic Pain
Christopher P. Smith, MD, MBA, MSS, Associate Professor, is a Board-certified urologist specializing in male and female urinary incontinence and voiding dysfunction. Dr. Smith attended Northwestern University Medical School in Chicago and received his residency training in urology at Baylor College of Medicine. He completed his fellowship training under a National Institutes of Health (NIH) K12 Scholarship in Neurology and Female Urology at the University of Pittsburgh School of Medicine in Pennsylvania. He received his MBA at the Katz School of Business, University of Pittsburgh, and his Master of Strategic Studies from the U.S. Army War College in Carlisle, Pennsylvania.
Samantha Ginsburg, PT, DPT The Physical Therapy Approach, Treating Male Patients with IC/PBS
Join us for on October 16th at 6:00pm ET!
Speaker: Samantha Ginsburg, PT, DPT
Topic: The Physical Therapy Approach, Treating Male Patients with IC/PBS
Samantha Ginsburg is a practicing physical therapist working in Philadelphia, Pennsylvania at Thomas Jefferson University Hospital’s outpatient physical therapy clinic. She received her Bachelor of Science in Kinesiology as well as her Doctor of Physical Therapy degree from Temple University. She has taken both APTA and Herman and Wallace continuing education courses, in addition to participating in a rigorous mentorship program to become a pelvic floor specialist. She treats patients of all genders for pelvic floor related issues. She takes a special interest in helping people in the LGBTQIA+ community. She has participated in multiple continuing education opportunities to further her knowledge base for this community, as well as teach her own course related to this topic. Samantha is passionate about providing inclusive, empathetic and holistic care.
Laura Santurri, PhD, MPH, CPH and Renee Hetzler, PT, DPT Don't Believe Everything You Read: How to Make Informed Decisions About Your Care
Join us for on August 10th at 5:00pm ET:
Speakers: Laura Santurri, PhD, MPH, CPH and Renee Hetzler, PT, DPT
Topic: Don't Believe Everything You Read: How to Make Informed Decisions About Your Care
In addition to being the Chair of the ICA Board of Directors, Dr. Laura Santurri is an Associate Professor in the College of Health Sciences at the University of Indianapolis. Her scholarly interests include the lived experience of managing chronic conditions, especially those that involve chronic pain. Laura has lived with interstitial cystitis/bladder pain syndrome for over 25 years.
Dr. Renee Hetzler is a physical therapist and Assistant Professor in the Physical Therapy Department at Nazareth University. She specializes in neurologic physical therapy but has experience with a wide variety of conditions, including chronic pain conditions. She is currently pursuing her Doctor of Health Science degree at the University of Indianapolis. Her scholarly interests include community education and wellness for people living with chronic conditions.
Jennifer Fariello Moldwin, MSN, MEd, WHNP-BC When Sex Hurts
Join us for on July 24th at 2:00pm ET:
Speaker: Jennifer Fariello Moldwin, MSN, MEd, WHNP-BC
Topic: When Sex Hurts
Jennifer Fariello Moldwin, MSN, MEd, WHNP-BC, is Nurse Practitioner for Female Pelvic, Urogenital Pain and Sexual Medicine in Urogynecology at Northwell Health located at offices in Bay Shore and Syosset, NY. She has been diagnosing and treating women with pelvic and/or sexual pain caused by interstitial cystitis/bladder pain syndrome, pelvic floor dysfunction, vulvodynia, vulvar dermatoses, recurrent vaginal and/or urinary tract infections for over 20 years. Ms. Fariello Moldwin has been involved in numerous research studies and has published extensively on these chronic pain conditions.
Tony Buffington, DVM, PhD Uncovering Social Factors in Chronic Primary Pain Conditions: Lessons from Our Feline Companions
Join us for on June 21st at 11:00am ET:
Speaker: Tony Buffington, DVM, PhD
Topic: Uncovering Social Factors in Chronic Primary Pain Conditions: Lessons from Our Feline Companions
Dr. Tony Buffington is an emeritus professor at The Ohio State University College of Veterinary Medicine, and clinical professor (volunteer) at the UC Davis School of Veterinary Medicine. He received BS, MS and PhD degrees in nutrition and the DVM degree from UC Davis. His clinical interests include environmental effects on disease, obesity, evidence-based medicine, and effective medical communications. His research has documented the effects of environmental stressors on disease in cats, and the effectiveness of environmental enrichment in mitigating them to promote recovery. Dr. Buffington has published 130 scientific papers, 30 book chapters, and 3 books.
Robert Moldwin, MD The Pelvic Floor Muscles: Another Possible Source of Pain for the IC/BPS Patient
May 24, 2023
Speaker: Robert Moldwin, MD
Topic: The Pelvic Floor Muscles: Another Possible Source of Pain for the IC/BPS Patient
Robert Moldwin, MD, FACS is Director of the Pelvic Pain Center at The Arthur Smith Institute for Urology and serves as physician-in-charge of Urologic Infectious/Inflammatory Diseases. He is Professor of Urology at the Hofstra North Shore-LIJ School of Medicine.
David Klumpp, PhD Bacteria as Pelvic Pain Triggers and Potential Therapies
April 19, 2023
Speaker: David Klumpp, PhD
Topic: Bacteria as Pelvic Pain Triggers and Potential Therapies
Dr. Klumpp is Professor of Urology and Microbiology-Immunology in the Northwestern University Feinberg School of Medicine and the Anthony J. Schaeffer MD Professor of Urology and serves on the ICA Board of Directors.