Tor Reid’s office. I arrived with two people. Senator Reid asked the Director of NIDDK to explain his position, and then asked me to explain mine. I used the example of HIV/AIDS–that you could study the basic immune system for years, but if you didn’t study the HIV virus at the same time, you would not come any closer to finding the cause or cure of HIV/AIDS. Senator Reid stood up, not wanting to waste time, and said to the Director of NIDDK, “We can do this nicely or not” and proceeded to walk out of the room. This inferred that he planned to support IC specific research, as was dictated by Congressional Report Language that year. The three of us (myself and two others) were elated, having won a major battle. Many IC specific proposals were funded by NIDDK that year. The ICA was and is extremely grateful to the Director of Urology at NIDDK during these many years including Lee Nyberg, M.D., Ph.D., now retired, and currently Dr. Chris Mullins, Ph.D., for their tremendous support, and for allowing the ICA to actively participate in all biannual national IC scientific conferences, buy BFA clinical trials meetings, the Rand study, and to have a voice at other national and international meetings. I was appointed to serve on the NIDDK Advisory Council for a 4-year term. This council is responsible for reviewing all final TAPI-2 web grants recommended for approval as well as making a final decision on those grants that scored just above the critical number of points needed for approval. (The lower the number, the better the score). It was quite an honor, and it gave the ICA a voice when urologists were making decisions about whether or not to fund various urological grants. Pilot research program through the ICA This program began very early on in the formation of the ICA, thanks to the generous donation of one of the ICA’s Board Members. Subsequently, the ICA raised research funds each year and was able to raise enough money annually to fund three to four projects of approximately 10-15,000 each. We were very fortunate to have a benefactor, The Fishbein Family IC Research Foundation,?Translational Andrology and Urology. All rights reserved.www.amepc.org/tauTransl Androl Urol 2015;4(5):491-Translational Andrology and Urology, Vol 4, No 5 Octoberwho donated a substantial amount of research funding each year to the ICA. Their twin daughters both have IC. Every year, a Request for Applications was sent out by the ICA specifying what areas of research we were interested in pursuing. The grants were then reviewed by committee, including the ICA President and several of the ICA’s Medical Advisory Board Members, a combination of researchers and clinicians. Once the recipients were chosen, they produced preliminary data that would at least give them a chance of competing for an NIDDK grant. Without any preliminary data, there would be little if any chance of being successful. This critical program was a steppingstone to NIDDK funding. We had an exceptionally high rate of ICA funded grants that went on to receive funding by the NIDDK–over 40 . The staff Staff is the backbone of any organization. I consider myself fortunate to have worked with so many talented and gifted staff, Board Members and volunteers. They did the work that needed to be done, and if it took 7 days a week, they put in the time. We ran on a shoestring budget, and often could not afford an office. The pay was hardly commensurate with what they deserved, but they persevered. Many of us lived in diff.Tor Reid’s office. I arrived with two people. Senator Reid asked the Director of NIDDK to explain his position, and then asked me to explain mine. I used the example of HIV/AIDS–that you could study the basic immune system for years, but if you didn’t study the HIV virus at the same time, you would not come any closer to finding the cause or cure of HIV/AIDS. Senator Reid stood up, not wanting to waste time, and said to the Director of NIDDK, “We can do this nicely or not” and proceeded to walk out of the room. This inferred that he planned to support IC specific research, as was dictated by Congressional Report Language that year. The three of us (myself and two others) were elated, having won a major battle. Many IC specific proposals were funded by NIDDK that year. The ICA was and is extremely grateful to the Director of Urology at NIDDK during these many years including Lee Nyberg, M.D., Ph.D., now retired, and currently Dr. Chris Mullins, Ph.D., for their tremendous support, and for allowing the ICA to actively participate in all biannual national IC scientific conferences, clinical trials meetings, the Rand study, and to have a voice at other national and international meetings. I was appointed to serve on the NIDDK Advisory Council for a 4-year term. This council is responsible for reviewing all final grants recommended for approval as well as making a final decision on those grants that scored just above the critical number of points needed for approval. (The lower the number, the better the score). It was quite an honor, and it gave the ICA a voice when urologists were making decisions about whether or not to fund various urological grants. Pilot research program through the ICA This program began very early on in the formation of the ICA, thanks to the generous donation of one of the ICA’s Board Members. Subsequently, the ICA raised research funds each year and was able to raise enough money annually to fund three to four projects of approximately 10-15,000 each. We were very fortunate to have a benefactor, The Fishbein Family IC Research Foundation,?Translational Andrology and Urology. All rights reserved.www.amepc.org/tauTransl Androl Urol 2015;4(5):491-Translational Andrology and Urology, Vol 4, No 5 Octoberwho donated a substantial amount of research funding each year to the ICA. Their twin daughters both have IC. Every year, a Request for Applications was sent out by the ICA specifying what areas of research we were interested in pursuing. The grants were then reviewed by committee, including the ICA President and several of the ICA’s Medical Advisory Board Members, a combination of researchers and clinicians. Once the recipients were chosen, they produced preliminary data that would at least give them a chance of competing for an NIDDK grant. Without any preliminary data, there would be little if any chance of being successful. This critical program was a steppingstone to NIDDK funding. We had an exceptionally high rate of ICA funded grants that went on to receive funding by the NIDDK–over 40 . The staff Staff is the backbone of any organization. I consider myself fortunate to have worked with so many talented and gifted staff, Board Members and volunteers. They did the work that needed to be done, and if it took 7 days a week, they put in the time. We ran on a shoestring budget, and often could not afford an office. The pay was hardly commensurate with what they deserved, but they persevered. Many of us lived in diff.
