icnmgrjill
03-01-2008, 07:52 PM
Yesterday, the ICA announced by e-mail that founder & President Vicki Ratner MD has "stepped down" from her position as President of the organization. A new Executive Director, Barbara Gordon, will begin work in early March 2008.
We would like to take a moment to acknowledge Dr. Ratner who is, easily, the most recognized IC figure in the world today. She has been with the ICA for more than 25 years as its President and/or as a paid staff member. She had a tenacious drive to increase funding for IC research which, during her tenure, increased dramatically. From lobbying Congress to serving on various NIDDK committees, chairing IC conferences to working with various media outlets, she has been a pivotal figure in the IC movement. Her departure comes as a huge surprise.
In fifteen years, I rarely heard Dr. Ratner talk publicly about her IC. I find it impressive that she was able to travel so extensively and work so diligently given the challenges of having IC. She certainly deserves our accolades for being such a passionate IC advocate.
This transition comes at a challenging time. Not only is the IC international research community still debating a possible name change for IC, many researchers are now accepting the fact that IC is probably far more than a bladder disease. The latest MAPP study launched by the NIDDK is exploring how IC is related to its most common related conditions such as irritable syndrome and vulvodynia. It was also with great disappointment that we learned that the NIDDK funded clinical trial for a new IC treatment (Cellcept) was terminated just a few weeks ago due to a lack of positive results.
Pharmaceutical companies that have helped develop and fund IC outreach efforts are in transition, particularly with this difficult economy. Many see the profit potential of the IC community as limited and have moved on to other more profitable medical conditions. Others have products which, over time, have lost popularity as an IC treatment (i.e. DMSO). Luckily, some new over-the-counter supplements have created interest and excitement with a few new companies.
Similarly, the IC patient movement continues to change and diversify. No longer is the ICA the only patient organization in the USA or world. The IC Network continues our focus on needs of the IC patient, offering more than 300,000 support sessions per month in our support forum, live chats and phone support. Pure-Hope, formerly ICU Texas, is a new national non-profit focusing on both IC and pelvic pain whose strength lies in creating conferences and events. Local IC groups continue to function independently proving that they don't need a national organization to manage them. A wide variety of international IC/PBS patient organizations now exist. Funding has become far more competitive with so many more hands reaching for a piece of the pie.
So, the question is, where will the ICA go in the coming years? Their success is clearly research and we hope that these efforts continue. We're particularly excited about research "beyond the bladder." If you've spent any time with an IC support group, it's crystal clear that the relationship between IC and it's related conditions must be explored in depth if we're to uncover why and how these conditions occur simultaneously. Why do so many of us have anxiety disorder and IBS?? Why do women with IC often struggle with vulvodynia. How does IC vary between men, women, children and/or cultures?? What are the most promising new treatments under development?? For every new fact learned in a research study, it seems as if a dozen more questions emerge. The race is on and the ICA is an important part of our future.
We also hope that there will be more openness in the IC community in coming years:
We hope that researchers with divergent and/or new viewpoints will have the opportunity to have their voices heard, particularly at the federal level.
We hope that national and regional patient group leaders in the USA will gather together, atleast once a year, to discuss our common goals for the IC community. We have urgent issues that need attention, such as the dramatic rise of false cures on the web that are bilking patients out of thousands of dollars. The power of our collective diversity and individual organizational strengths has yet to be tapped. Collaboration, not competition, is vital to our overall success.
We hope that more IC educational events will occur, particularly in areas that have been previously underserved, particularly the southeast.
We hope that the youngest and newest members of the IC community will speak out on their needs, hopes and dreams and participate actively in our organizations. (Fifteen years ago, when we were new, we were laughed at for wanting to offer IC support on the web!). The door must always remain open to the next generation of our community. If that door is shut, the IC movement will lose our ability to respond, in a timely way, to the changing needs of the IC patient.
Yes, our wish list can go on endlessly but time is short today. I'd like to welcome Barbara Gordon to the IC community. She has taken on a large and complex job during what may be the most difficult period for the IC movement. We wish her success.
Jill Osborne, MA - ICN President & Founder
Age 47, Diagnosed at 32, First Symptoms at 13.
We would like to take a moment to acknowledge Dr. Ratner who is, easily, the most recognized IC figure in the world today. She has been with the ICA for more than 25 years as its President and/or as a paid staff member. She had a tenacious drive to increase funding for IC research which, during her tenure, increased dramatically. From lobbying Congress to serving on various NIDDK committees, chairing IC conferences to working with various media outlets, she has been a pivotal figure in the IC movement. Her departure comes as a huge surprise.
In fifteen years, I rarely heard Dr. Ratner talk publicly about her IC. I find it impressive that she was able to travel so extensively and work so diligently given the challenges of having IC. She certainly deserves our accolades for being such a passionate IC advocate.
This transition comes at a challenging time. Not only is the IC international research community still debating a possible name change for IC, many researchers are now accepting the fact that IC is probably far more than a bladder disease. The latest MAPP study launched by the NIDDK is exploring how IC is related to its most common related conditions such as irritable syndrome and vulvodynia. It was also with great disappointment that we learned that the NIDDK funded clinical trial for a new IC treatment (Cellcept) was terminated just a few weeks ago due to a lack of positive results.
Pharmaceutical companies that have helped develop and fund IC outreach efforts are in transition, particularly with this difficult economy. Many see the profit potential of the IC community as limited and have moved on to other more profitable medical conditions. Others have products which, over time, have lost popularity as an IC treatment (i.e. DMSO). Luckily, some new over-the-counter supplements have created interest and excitement with a few new companies.
Similarly, the IC patient movement continues to change and diversify. No longer is the ICA the only patient organization in the USA or world. The IC Network continues our focus on needs of the IC patient, offering more than 300,000 support sessions per month in our support forum, live chats and phone support. Pure-Hope, formerly ICU Texas, is a new national non-profit focusing on both IC and pelvic pain whose strength lies in creating conferences and events. Local IC groups continue to function independently proving that they don't need a national organization to manage them. A wide variety of international IC/PBS patient organizations now exist. Funding has become far more competitive with so many more hands reaching for a piece of the pie.
So, the question is, where will the ICA go in the coming years? Their success is clearly research and we hope that these efforts continue. We're particularly excited about research "beyond the bladder." If you've spent any time with an IC support group, it's crystal clear that the relationship between IC and it's related conditions must be explored in depth if we're to uncover why and how these conditions occur simultaneously. Why do so many of us have anxiety disorder and IBS?? Why do women with IC often struggle with vulvodynia. How does IC vary between men, women, children and/or cultures?? What are the most promising new treatments under development?? For every new fact learned in a research study, it seems as if a dozen more questions emerge. The race is on and the ICA is an important part of our future.
We also hope that there will be more openness in the IC community in coming years:
We hope that researchers with divergent and/or new viewpoints will have the opportunity to have their voices heard, particularly at the federal level.
We hope that national and regional patient group leaders in the USA will gather together, atleast once a year, to discuss our common goals for the IC community. We have urgent issues that need attention, such as the dramatic rise of false cures on the web that are bilking patients out of thousands of dollars. The power of our collective diversity and individual organizational strengths has yet to be tapped. Collaboration, not competition, is vital to our overall success.
We hope that more IC educational events will occur, particularly in areas that have been previously underserved, particularly the southeast.
We hope that the youngest and newest members of the IC community will speak out on their needs, hopes and dreams and participate actively in our organizations. (Fifteen years ago, when we were new, we were laughed at for wanting to offer IC support on the web!). The door must always remain open to the next generation of our community. If that door is shut, the IC movement will lose our ability to respond, in a timely way, to the changing needs of the IC patient.
Yes, our wish list can go on endlessly but time is short today. I'd like to welcome Barbara Gordon to the IC community. She has taken on a large and complex job during what may be the most difficult period for the IC movement. We wish her success.
Jill Osborne, MA - ICN President & Founder
Age 47, Diagnosed at 32, First Symptoms at 13.