Interstitial Cystitis Association

I've had IC for over twenty years now, and the Interstitial Cystitis Association has been there for me from almost the beginning (I wasn't diagnosed until about three years into having symptoms). They were instrumental in helping me get a diagnosis and find providers who could help me. In addition, they assisted me in getting the word out about my support group for people living with IC, gave me opportunities to raise awareness of the condition, and helped shaped me as the IC advocate that I am today. I am beyond grateful!

The ICA saved my life! Without the ICA and its founder Dr Vicki Ratner, there would be no recognition of this terrible condition and I would have been labeled "nuts" or treated for infections for years that I never had. So grateful I found the ICA when I did as I have been able to educate healthcare professionals and patients on how to get appropriate therapy. Can't say enough good things!!

I was diagnosed with IC a few years ago. Because of the ICA website, it didn't take me as long to get diagnosed as I hear from many other IC patients. Thank you ICA for having the resources I needed for a quick and proper diagnosis...it was lifesaving! The doctor understood my symptoms and I felt validated! I'm looking forward to walking with fellow IC warriors in September to raise more awareness.

I don’t get it. What does the ICA actually do for patients anymore? They sponsor a walk a year attended by maybe 100 people and so some lobbying, again with a small group of doctors and patients, once a year but where does the rest of their money go? Their online groups appear to be unmonitored. Newsletters are rare. It feels like a shell of what it was a decade ago. Is anyone even listening to the patient community anymore or has it become one of many nonprofits that just raise money that then disappears in administrative costs. Hiring the consulting company to run the organization has completely disconnected the organization from the patients. There used to be a thriving network of support groups. There used to be group leader training. There used to be great phone support. There used to be patients who answered the phone and knew what they were talking about. Today, its mostly gone and patient outreach is less important than fund raising. Oh well.

Just wanted to say that the ICA is alive and well. It is true that in 2011 we lost a grant from the CDC that represented a large portion of our yearly budget. The Board of Directors of the ICA spent many long hours trying to come up with a plan that would allow us to continue with our mission which is now, and has always been, to provide education, advocacy and research dollars to educate patients, family members, physicians and researchers. Unfortunately, as with any downsizing, some jobs were cut. After much research, it was determined that becoming part of an Association Management Company would be a way for us to continue operating and cut some of our expenses.

The day-to-day operations of the ICA are managed by our Executive Director, Lee Claassen. We also have a Program Coordinator and an employee who handles the day to day phone calls and requests for informational materials. Additionally, we have two patient advocates who work tirelessly to help those suffering with IC and several volunteers.

We have a strong Board of Directors whose job is to set goals and plan for the future of the ICA. There is no lack of transparency as we are required to file a Form 990 with the IRS on yearly basis. This report is available to the public. We also prepare an annual report that includes financial statements as well as highlights from the year.

As you can see, the ICA is not in LIMBO! In fact, far from it!!

I've been asked to write a follow up review of the ICA and, sadly, must report that in 2011 the organization has let go most of their staff due to the loss of their federal funding. They are now using a non-profit management organization to manage the day to day operations. They seem to be "in limbo" made all the more challenging by their disconnect from their own membership who, yet again, are not involved in the planning and goal setting for the organization. Their lack of transparency remains a concern. I would be much more inclined to donate again if meetings were public and members/donors were given some way to be involved in the goal setting and planning of the organizations mission.

I think that the ICA has help to bring awarness and education not only to the Drs and caregivers, but the the people who are living with this chronic conditon. It will change your life. I thank the ICA for there efforts and support to people with IC. thanks

This nonprofit has been a lifesaver for me and my family. I was diagnosed with Interstitial Cystitis in 1995, but had it for many years prior to my diagnosis. Before i was correctly diagnosed, I was sent to many physicians. I still suffer 20 years later terribly with this disease, BUT The Interstitial Cystitis Association has allowed me to understand, cope and has given me HOPE for the future for a CURE!!! Making donations several times a year I have also made tribute gifts in honor of my heathcare providers. The ICA update which is published quarterly by this organization is chock full of Must have information for an IC patient suffereing from this difficult disease. When there was no one to turn to i the early 1990's this organization, basically saved my life, by allowing me not to feel isolated. This organization is worthy of your finacancial support in order for it to contiue to provide that much needed assistance IC patients so desperately need. They helped me to gain the knowledge i needed to help me make informed medical decisions. Their website is also available and they are now on facebook. Always seeking new ways to reach a suffereing patient. Please donate to this valuable non-profit.

When I was told I had IC in 1990 there was very little information available for doctors or patients. I was fortunate that I had one of the best doctors in the nation who directed me to a support group that had materials from the ICA. Soon after that my sister encouraged me to get a computer and "on the net" (this was the olden days!) and join online chat groups that she had found about IC. I've been using the support system of the ICA ever since. Whether it's checking on their website for new treatment protocols, checking the Facebook updates, getting my ICA email updates or directing newly diagnosed people to their website, the ICA plays a critical part in IC treatment for anyone who is going through the journey of learning to live with IC and the many autoimmune issues they will also have to deal with. The ICA freely shares information, support and guidance to members and non-members, patients, family and doctors; and has been building their website resources as well as trying to keep support groups going in real locations as well as on the internet. The ICA has given great support to my doctor, Dr. Robert Evans, who is dedicated to IC research and finding a way to relieve the pain that limits our lives each day. They have given him a platform to share his knowledge and a place to share his ideas with other researchers. I'm sure their support has allowed him to get some of the funding and attention he needs to continue the research he is doing. I know that research will eventually help me on a personal level, because he SEES me and he KNOWS me and how IC AFFECTS me, and he's working hard to find something to HELP me and others, and the ICA HELPS HIM HELP ME.

The ICA website is a wealth of information. For t those newly diagnosed, it is absolutely essential they learn as much as they can from ICA. I've been diagnosed for over 4 years now and the only people I've run into that have heard about IC are urologists and ob/gyns. I wish ICA could produce a commercial on TV to promote awareness. This is such a painful disease and we deserve more attention and research done on finding a cure.

I found this website by doing an online search when I was diagnosed last Summer. They had the most up to date information on everything for diet to meds to keeping journals to finding Helathcare providers. My Urologist, who is great, was not a memeber and did not have materials. I reccomended the website to both him and another Health Professional and they thought it was great. I have ordered several books, and they have helped me figure out my diet restrictions. I owe a ton of thanks to ICA for helping me figure out where to go and to have some hope for the future.

When I was diagnosed with IC I had never heard of the condition. When finding this organization on the web I felt I was not alone with my suffering. The diet suggestions and other helpful information helped me get through the worst of it and even persuade my urologist to try a procedure that make my life better.