Saturday, October 6, 2012



Today, I am taking time to say thank you to the Interstitial Cystitis Association! If you have been reading my blog it is very likely because I have posted about it on the ICA’s Facebook page (thank you ICA). So I wanted to take today to pay tribute to the ICA for all the work they do for those of us suffering from IC and related conditions. If we are taking advantage of the services they provide by using the ICA Facebook page to reach out to others with IC, share our experiences and get support from each other, we have the ICA to thank for this. Without the important work they do, so many of us would still be looking for good information, a place for support and updates on research and education programs. If you are taking advantage of the ICA Facebook page, the very excellent ICA website, we owe the ICA a debt of gratitude.  

A federal grant funded through the Centers for Disease Control and Prevention (CDC) IC Program has provided approximately 50% of the ICA’s budget. Because of the fiscal 2011 budget cuts, the CDC eliminated funding for the IC Program and the ICA did not receive this grant funding as originally allocated. This was a tremendous loss in dollars that supported the important mission of the ICA! It has been a struggle without this funding to keep the ICA’s mission alive, and continue to help patients like us, without additional fundraising.  In June this year, members of the ICA’s Board of Directors, Executive Director and IC Advocates were on Capitol Hill discussing medical research and public health funding levels in the fiscal year 2013 federal government budget. The ICA team met with 24 Congressional offices representing 9 states and the District of Columbia and much more! You can read more about this on the ICA’s website using the following link:

Just this past week, the ICA posted on their Facebook page about attending and participating in the American Urogynecologic Society (AUGS) Annual Meeting in Chicago. You’ve probably seen several posts about this on the ICA Facebook page.  These are the extremely important types of activities that help raise awareness and educate the medical community, which we all agree is so important. This is the truly important work that the ICA is doing on our behalf.

Of course, participating in events like this, keeping the website up and running and current, keeping the Facebook page up, educating the medical community and so much more,  takes money and the ICA desperately needs funding in order to continue the important work they do and keep their mission and vision alive for all of us living with IC.

So here’s the thing, I believe the best thing any of us can do to support the ICA is to become a member! By becoming a member you are helping the ICA help us all! As you will read on the ICA website: “Membership donations help fuel daily operations, keeping the ICA there for newly diagnosed patients, giving us the ability to respond to advocacy issues as they arise, and monitoring ICA pilot and other research grant programs.”

If money is tight (I get it, I’m on Disability), ask friends and family to get together and give you a gift of an ICA Membership for your Birthday, Anniversary, Holiday Gift or just because they know it’s important to you and want to support you.  I know we all have medical bills and not a lot of spare cash, but I believe being a member is so important I save up throughout the year to insure that I can renew my membership every year. Save your spare change until you have enough; there are so many ways to come up with $45 if you put your mind to it. 

You could also start your own Fundraising Campaign. I’ve done this. The ICA even has a great FREE Fundraising  Toolkit and will set up a page on the ICA website where people can go to donate to your campaign. I recently raised over $400 for my continuing campaign by simply emailing my friends and family and asking that for my birthday they not give me gifts, but instead donate to my Campaign! It was so exciting to raise that much money (that will go DIRECTLY to IC research) with just one email! I’ll post a link to the Fundraising Toolkit page and you can see my page as well as fundraising pages set up by others.

The ICA Facebook page has over 10,000 “Likes”.  Just imagine what impact we could have on helping not just the ICA, but in turn all of us suffering from IC, if everyone who “Likes” the ICA Facebook page actually became a member! 


  1. Excellent points!
    I am proud to be a member of the ICA & thankful for all they do for IC patients!

  2. Thank you for commenting and following my bog! I too am a proud member of the ICA; they have helped me tremendously!