ICA's 2023 Success Story
As we start the new year, we’d like to take a moment to reflect on the journey we shared in 2023. It was a year filled with successes, growth, and significant impact. We are sincerely grateful for the contributions of all those who have played a role in our collective accomplishments. Now, let's take a glimpse at a handful of notable moments from the previous year.
Medical Advisory Council
We are excited to announce that in 2023, the ICA established the Medical Advisory Council (MAC), which consists of leaders in IC/BPS healthcare and research. The MAC provides medical and scientific expertise to advance the ICA's mission.
Four Star Charity Navigator Rating
The ICA has been evaluated by Charity Navigator, the world’s largest and most trusted nonprofit evaluator, and earned a Four-Star Rating! This is the highest possible rating on Charity Navigator. Charity Navigator uses data from the IRS, partners, and the charities themselves to power their unbiased ratings so that you can give with confidence.
ICA Monthly Expert Speaker Series
The ICA launched Navigating IC/BPS: Conversations with Experts. This monthly webinar series aims to equip individuals with the latest knowledge, insights, and groundbreaking information. Topics covered include: the Physical Therapy Approach, When Sex Hurts, the Pelvic Floor Muscles: Another Source of Pain for the IC/BPS Patient, How to Make Informed Decisions About Your Care, and more.
IC/BPS Awareness Month Proclamations
The ICA created the first-ever IC/BPS Proclamation Proposal to raise awareness about IC/BPS. The proposal outlines the steps to submit a proclamation to state and local governments requesting a proclamation honoring/acknowledging IC/BPS Awareness in September. The proposal’s mission is to increase political awareness of IC/BPS in hopes of sparking interest from the city council and state legislatures regarding the disease and its impact on constituents.
ICA Advocacy Day
ICA Board Members, staff, and passionate advocates met with Congressional offices from 16 different states advocating for pivotal research funding and education for the IC/BPS community. The ICA continues to have a presence on Capitol Hill throughout the year, as this essential advocacy work benefits so many individuals who are affected by this condition.
Pain To Purpose
In September, the ICA organized a virtual event called Pain to Purpose. The event aimed to provide support and hope to people with IC/BPS. It spanned the entire month and included a week of dedicated programs and offerings on topics such as Men with IC/BPS, Care Partners & Support Systems, Nutrition & Diet, How to Prepare for Your Healthcare Provider Visit, Intimacy, Mental Health from experts in the field, and a live online support group.
Symposium on Multidisciplinary Approaches
ICA hosted a groundbreaking symposium titled IC/BPS and Other Forms of Pelvic Pain: A Symposium on Multidisciplinary Approaches. The symposium aimed to address the challenges and provide new insights into the diagnosis and treatment of chronic pelvic pain conditions, such as IC/BPS, prostatitis, pelvic floor muscle spasm, and male and female sexual pain.
IC/BPS Symposium & ICA Awareness Walk
In March, renowned physicians and researchers in the field of IC/BPS shared their knowledge, expertise, and invaluable insights at the IC/BPS Symposium with attendees both in-person at NSU in Clearwater, FL and virtually. Featured speakers included Kristene Whitmore, MD, Robert Evans, MD, Robert Moldwin, MD, and Theoharis Theoharides, MS, MPhil, PhD, MD, FAAAAI. Following the day-long event, attendees walked together to raise funds and awareness for IC/BPS!
2023 ESSIC Meeting
The ICA was invited to participate in the International Society for the Study of IC/BPS (ESSIC) meeting in New York City. Board Chair Laura Santurri and Claudia King, Vice Chair, participated by sharing with worldwide IC/BPS physicians and researchers about the ICA and the importance of advocacy organizations.
Public Awareness Campaign
Under the CDC cooperative agreement grant, the ICA partnered with Dr. Catherine Brownstein of Boston’s Children’s Hospital to launch a public awareness campaign. The campaign included advertisements on public transportation in the Boston Metro area and on social media.
Boston Children's Hospital Research
Also, as part of the CDC cooperative agreement grant, the ICA partnered with Boston Children's Hospital to develop and disseminate a survey for patients who have been diagnosed with or experienced symptoms of IC/BPS. This is ongoing research that we will continue to report on throughout the year.
Community Engagement
The ICA provides support communities for those affected by IC/BPS. These communities are places for fostering connection, sharing experiences, and collective growth/learning. The ICA’s Facebook group has over 5,000 members, while the online support community has over 45,000 members. The ICA also has a Facebook page with 42,000 followers, an Instagram account with over 2,000 followers, and a YouTube channel with over 3,000 subscribers. Additionally, you can sign up for the ICA eNews, the ICA’s monthly online newsletter.
Our achievements are made possible by your support. Consider making a donation to the Interstitial Cystitis Association and contribute to our ongoing efforts to make a positive impact in the lives of those living with IC/BPS.