For the past couple of weeks, the Interstitial Cystitis Association (ICA) has been soliciting applications for their Board of Directors. They announced, today, that they are extending the deadline through Sunday, July 20th. (See announcement here!) I want to encourage anyone who has passion for the IC movement to apply. They have a simple application process & form.

Board members act as leaders and role models. They evaluate the progress of the organization for the previous year. They set priorities for future goals and objectives. They set budgetary goals and review the overall budget established by the staff.  They also review the performance of the Executive Director on an annual basis to determine if that individual is meeting the organizations goals & objectives. Good Board members ask questions, do their own research, talk with the membership and, most of all, encourage transparency in all operations.

#1 Encourage Budget Transparency

If you join their Board, I hope that you will help the organization be more transparent with respect to budget decisions and priorities. For example, an examination of their 2013 IRS Form 990 show’s that a whopping $490,000 (a bit less than half of their entire budget) was given to an independent contractor, the Coulter Company, for managing their day to day operations, as part of an overall allocation of $652,000 for fees for management services. This concerns me. Why? Because we have no idea how that money is being used.




Non-profit organizations are required to release the salary figures for their top employees but you will see that there is no salary listed for the current Executive Director Lee Claassen because she is actually an Associate Vice President of Coulter and Company. I think that the IC community is entitled to know budgetary details like this. For decades, the ICA did disclose the compensation of their “Executive Director.” (See the salary of the Executive Director in 2011 here)

#2 Maximize Research Funding & Reduce Management Service Fees

I, like you, would like to see as much money as possible given to IC research. In 2013, they gave only $38,644 in research grants to a total of four researchers. If you examine their IRS Form 990’s for the past years, you’ll see shockingly low research distributions when compared to their overall million dollar budget. How is this decision made? My copy of the original by-laws for the ICA said that it was originally organized as a member driven organization and that members could attend annual meetings to review the finances and discuss the budget. Yet, has there been an annual meeting in the past ten years?? fifteen years? twenty years?   Shouldn’t the IC patient, and/or members & donors of the ICA have the opportunity to provide feedback on their budget priorities and decisions? Wouldn’t you like to see some of that $650,000 in “management services” actually go to research instead?


Update – September 4,  2015 

I’ve been informed that the ICA has increased their research funding for fiscal year 2015 to approx. $140,000, including the funding of two new research positions in collaboration with the Urology Care Foundation. This is very encouraging!

#3 Open Board Meetings & Provide Transcripts of Meetings & Votes

I would like to see more transparency at the Board level. Many national non-profit organizations have open public board meetings where the public is invited to participate. Not so the ICA. In 20+ years, I’ve never seen an open meeting announced where we, the IC patient, can attend and see how how its Board of Directors & Executive Director work together. Frankly I’m baffled by that because I served on the Board of Directors of two low income organizations that received sizable federal funding and we were required to have publicly noticed meetings and follow the Brown Act (Open Meeting Law). The public should have the opportunity to participate. How can the ICA’s Board really reflect the heart and soul of the IC community if they don’t give the patient a voice in the issues and process?  I’d also like to see the minutes from these Board meetings published on their website so that the public can see what the discussions, motions and votes are.

#4 Allow Open Voting Of Officers

I’m curious about how the officers of the organization are selected. My copy of the original by-laws said that members were to vote for those positions.  When I was a member of the ICA, I was never given the opportunity to vote. Anyone else? Was that decision taken away from the “members?” If so, when? Who exactly comprise “voting members” in 2015? I have no idea.

Who Will The Next Generation Be?

With every new Board of Directors member, an organization is given the potential of new leadership, skills, ideas and prospects. Dysfunctional organizations often have passive Boards that merely support a dominating President or Executive Director. Functional and progressive organizations have Board members that embrace their role, ask tough questions and who bring strong oversight and skills to the table. I have no idea how the current Board of Directors functions because those meeting results are not released but I am surprised that such a disparity exists between management fees and research funding.  What I do know is that the IC community needs and deserves more strong leaders. More importantly, we need to insure that new people are rising in the ranks so that they can be our leaders in the near and far future!

If you would like to help determine the future of the ICA, please apply and dare to bold!  At a minimum, I hope that you encourage transparency.