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ICA Celebrates 35 Years!

Commitment and perseverance from the many IC heroes in the IC community provided positive change for someone who needed the Interstitial Cystitis Association (ICA).

The ICA began with a call for action 35 years ago when ICA founder, Vicki Ratner, MD, developed an intolerably painful and debilitating bladder condition while in medical school. She was told by fourteen physicians that the issue was all in her head. Knowing this was not true, Dr. Ratner conducted her own research and properly diagnosed herself as having interstitial cystitis (IC) and began treatments that alleviated much of her discomfort.

Now, thanks in large part to the efforts of our founding IC hero, Dr. Ratner, the ICA has accomplished recognition from the medical community that IC is a chronic disease prevalent among men, women, and children and people of all ages and races. More and more doctors are trained to diagnose IC correctly and employ a multidisciplinary approach to treatment.

Over the decades, the ICA has gathered an army of IC heroes who have supported ICA’s mission to advocate for research dedicated to discovering a cure and better treatments, raise awareness, and serve as a central hub for healthcare providers, researchers, and millions of patients who live with IC/Bladder Pain Syndrome (BPS).

We still have many battles ahead of us. There remain many people who need our help. Donating to the ICA supports the training and education of healthcare professionals and the resources required to strengthen our commitment to the IC community by gathering diverse groups of specialists/supporters to help implement our mission. For example:

Medical Experts:

The ICA Medical Advisory Board (MAB) provides clinical IC/BPS expertise. The ICA is currently restructuring the MAB to incorporate a diverse multidisciplinary team of urologists, gynecologists, pelvic physical therapists, dietitians, nurses, and basic science researchers to review IC research grant materials, interpret guidelines and protocols, advise on communications content, and provide a link to the IC clinical, research, and academic communities.

Researchers:

ICA connects patients to research studies, e.g., the ICA has partnered with researchers at Beaumont Health Research Institute, who are working on developing the first diagnostic urine test for IC; the Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP); and the IC Hope Research Study, conducted by ICA Board Member Laura Santurri, PhD, MPH, CPH at the University of Indianapolis.

Communities of Support:

  • The ICA’s Walk for an IC Cure program raises widespread IC awareness, helps fight misconceptions so together IC patients are heard and know they are not alone, and creates local communities of support for people living with IC.
  • The ICA has a new “private” Facebook support group for the IC/BPS community. We are building an engaged group for anyone who is looking for a place to connect with others who are living with IC/BPS and their loved ones.
  • ICA’s Online Support Community has grown to over 18,000 users. This is a place of peace, hope, and advice that provides comfort for patients.

Advocates:

Every year, the ICA gathers supporters for the ICA Capitol Hill Advocacy Day, successfully advocating for funding for IC/BPS research, educational awareness programs, and access to pain medications.

Virtual Social Gatherings:

The ICA also gathers supporters virtually via webinars with topics such as “the IC Diet” and “IC & Relationships.” And…we have planned upcoming webinars and Zoom events being hosted by the ICA Medical Advisory Board.

Thirty-five years ago, the commitment to improve lives and identify an unknown condition was made, and the Interstitial Cystitis Association (ICA) was established. Today, the promise of hope and donations continue to fuel ICA’s ongoing work to conquer IC/BPS. As we look ahead, let’s celebrate the astonishing accomplishments of our IC heroes and look forward to continued advancements in IC/BPS awareness, advocacy, research, and education. If you are in the position to donate today, it will help ICA stay strong for those who need our support more than ever.

The ICA is the only nonprofit charitable organization dedicated solely to improving the quality of healthcare and lives of people living with IC/BPS and is a 501(c)(3) organization (EIN 13-3292137). Your contributions are tax-deductible to the fullest extent allowable by law.

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