Interstitial Cystitis Association https://www.ichelp.org Thu, 10 Jul 2025 16:35:19 +0000 en-US hourly 1 Advocating for Research, Education, and Awareness on Capitol Hill https://www.ichelp.org/advocating-for-research-education-and-awareness-on-capitol-hill/?utm_source=rss&utm_medium=rss&utm_campaign=advocating-for-research-education-and-awareness-on-capitol-hill Thu, 10 Jul 2025 14:59:34 +0000 https://www.ichelp.org/?p=8808 Advocacy in action! On July 8-9, 2025, ICA Executive Director, Laura Santurri, and Board Chair, Amber Carter-Frauenhofer, participated in the Chronic Disease Day Congressional Hearing and visited 15 Senate and…

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Advocacy in action! On July 8-9, 2025, ICA Executive Director, Laura Santurri, and Board Chair, Amber Carter-Frauenhofer, participated in the Chronic Disease Day Congressional Hearing and visited 15 Senate and Congressional Offices, representing 11 states, to raise awareness of IC/BPS and advocate for funding through the NIH, CDC, and Department of Defense. As Congress prepares for the appropriations process, it is vital that our senators and representatives understand the importance of funding for IC/BPS research, education, and awareness. Contact the ICA at ICAmail@ichelp.org to learn more about how you can get involved in this vital advocacy!

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Representing the Patient Voice https://www.ichelp.org/representing-the-patient-voice/?utm_source=rss&utm_medium=rss&utm_campaign=representing-the-patient-voice Tue, 06 May 2025 16:11:03 +0000 https://www.ichelp.org/?p=8547 April was a busy month for the ICA team! On April 23-24, 2025, ICA staff participated in the Global Consensus on IC/BPS meeting, hosted by the Wake Forest Institute for…

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April was a busy month for the ICA team! On April 23-24, 2025, ICA staff participated in the Global Consensus on IC/BPS meeting, hosted by the Wake Forest Institute for Regenerative Medicine, in Winston-Salem, North Carolina. At this meeting, committees used the scientific literature to come to a consensus on key issues related to the cause of interstitial cystitis/bladder pain syndrome, as well as how it is diagnosed, categorized, and treated. The ICA staff also presented on key patient perspectives that should be considered as consensus recommendations are drafted and shared.

Then, from April 26-28, 2025, the ICA staff and members of the board participated in the annual American Urological Association conference in Las Vegas, Nevada, by hosting a booth at the expo and convention center. This was an excellent opportunity for the ICA to remind healthcare providers about how our organization can benefit their patients (and them!) We were also able to present some key findings from the Patient-Reported Outcomes Committee at the Global Consensus on IC/BPS meeting.

It is always a privilege to represent the patient community and ensure our voice is heard!

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ICA Advocacy Day – April 8, 2025 https://www.ichelp.org/ica-advocacy-day-april-8-2025/?utm_source=rss&utm_medium=rss&utm_campaign=ica-advocacy-day-april-8-2025 Mon, 14 Apr 2025 18:56:36 +0000 https://www.ichelp.org/?p=8475 The ICA’s Advocacy Day on Tuesday, April 8, 2025, was a resounding success, with 10 ICA staff, board members, and volunteers teaming up for 18 visits with U.S. Senators and…

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The ICA’s Advocacy Day on Tuesday, April 8, 2025, was a resounding success, with 10 ICA staff, board members, and volunteers teaming up for 18 visits with U.S. Senators and Representatives. During our day on Capitol Hill, we advocated on behalf of the IC/BPS community to increase funding for the CDC IC Education & Awareness Program, keep IC on the list of eligible conditions in the Department of Defense’s Peer Reviewed Medical Research Program, and maintain robust funding for the NIH. Many thanks to the Health and Medicine Counsel for representing the ICA on the Hill and arranging our visits and to everyone who shared their story! To learn more about the ICA’s history of advocacy on the Hill and how you can get involved, watch our recent webinar providing an ICA Advocacy Update.

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IC Awareness Month: Celebrating 40 Years of Dedication and Community Support https://www.ichelp.org/ic-awareness-month-celebrating-40-years-of-dedication-and-community-support/?utm_source=rss&utm_medium=rss&utm_campaign=ic-awareness-month-celebrating-40-years-of-dedication-and-community-support Tue, 01 Oct 2024 15:26:03 +0000 https://www.ichelp.org/?p=7923 The IC Awareness Month event was a tremendous success, with 320 participants coming together to support the cause and benefit from valuable educational content. We raised $6,172, thanks to the…

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The IC Awareness Month event was a tremendous success, with 320 participants coming together to support the cause and benefit from valuable educational content. We raised $6,172, thanks to the generosity and dedication of our community. However, we have a way to go to reach our $20,000 match goal, and there’s still time to donate and fundraise. Every contribution, no matter the size, brings us closer to our target and helps us continue our mission.

Special recognition goes to our top fundraisers: Amber Carter, Nicole Mehall, and Claudia King. Their outstanding efforts have made a significant impact. Join the ICA in commemorating 40 years of dedication to the IC/BPS community!

We would also like to extend our heartfelt gratitude to our sponsors for their incredible support during ICA Awareness Month.

  • Platinum Sponsor: Desert Harvest
  • Silver Sponsors: Femetry and Prelief

Let’s continue to work together to make a difference!

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Help Shape the Future of IC/BPS https://www.ichelp.org/help-shape-the-future-of-ic-bps/?utm_source=rss&utm_medium=rss&utm_campaign=help-shape-the-future-of-ic-bps Tue, 01 Oct 2024 15:21:37 +0000 https://www.ichelp.org/?p=7918 The ICA is conducting a survey to better understand and support our IC/BPS community. By sharing your experiences and background, you help us identify the unique needs of our community.…

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The ICA is conducting a survey to better understand and support our IC/BPS community. By sharing your experiences and background, you help us identify the unique needs of our community. Your anonymous responses will guide us in creating meaningful programs and improving our communications. Together, we can make a difference and ensure everyone feels heard and supported.

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Continue Raising Awareness About IC/BPS! https://www.ichelp.org/continue-raising-awareness-about-ic-bps/?utm_source=rss&utm_medium=rss&utm_campaign=continue-raising-awareness-about-ic-bps Tue, 01 Oct 2024 15:17:05 +0000 https://www.ichelp.org/?p=7913 Even after IC Awareness Month, you can still make a significant impact. Print this flyer and take it to your doctors’ offices, or email it to them, asking them to…

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Even after IC Awareness Month, you can still make a significant impact. Print this flyer and take it to your doctors’ offices, or email it to them, asking them to display it prominently, even in the bathrooms. By spreading the word, you can help others receive a faster diagnosis and better treatment. Let’s work together to make a difference!

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2024 IC Awareness Month Proclamations https://www.ichelp.org/2024-ic-awareness-month-proclamations/?utm_source=rss&utm_medium=rss&utm_campaign=2024-ic-awareness-month-proclamations Tue, 01 Oct 2024 15:14:25 +0000 https://www.ichelp.org/?p=7909 The 2024 IC Awareness Month Proclamations have been very successful, with proclamations secured in several states and cities, including Texas, Oklahoma, Louisiana, Georgia, Ohio, Maryland, Connecticut, Virginia, New Jersey, Illinois,…

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The 2024 IC Awareness Month Proclamations have been very successful, with proclamations secured in several states and cities, including Texas, Oklahoma, Louisiana, Georgia, Ohio, Maryland, Connecticut, Virginia, New Jersey, Illinois, and Colorado, as well as the cities of Orlando, Florida, and Denver, Colorado. This recognition highlights the importance of raising awareness for interstitial cystitis/bladder pain syndrome (IC/BPS) and the efforts of the IC/BPS community.

These proclamations help bring attention to the challenges faced by those affected by IC/BPS and emphasize the need for continued support and research. The ICA, with the support of the IC/BPS community, worked hard to achieve this recognition and our efforts are making a difference in increasing visibility and understanding of the condition. This success sets a strong foundation for future advocacy and awareness initiatives.

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A Note from ICA Board Chair, Claudia King https://www.ichelp.org/a-note-from-ica-board-chair-claudia-king/?utm_source=rss&utm_medium=rss&utm_campaign=a-note-from-ica-board-chair-claudia-king Wed, 11 Sep 2024 20:53:19 +0000 https://www.ichelp.org/?p=7877 My name is Claudia, and I am an IC/BPS patient. I am honored to be the newly appointed Chair of the ICA Board of Directors. My deep belief in this…

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My name is Claudia, and I am an IC/BPS patient. I am honored to be the newly appointed Chair of the ICA Board of Directors.

My deep belief in this organization and desire to help others with IC/BPS inspired me to take on a leadership position within the ICA. After joining the ICA’s Board of Directors, I took on the role of Fundraising Committee Chair, then served as Vice Chair, and now, proudly step into the Chair position.
I was diagnosed with IC/BPS in 2005, and my journey has been a difficult one, as I’m sure you can relate. Particularly in the early days after my diagnosis, I felt incredibly isolated. I didn’t know anyone else with IC/BPS and had no idea how drastically my life would change. The fear, pain, anger, sadness, confusion, and loneliness were overwhelming.

Pretty quickly, I turned to the ICA. I am so thankful that I did. I learned more about IC/BPS, understood what to look for in my care team, and most importantly, connected with others who cared and understood me. Without the ICA and the support system I have built through them, I truly don’t know where I would be today – or if I would even be here.

Today, I need to ask you for help. The ICA is strongly funded by individuals just like you. However, in the last few years, donations have decreased. I am asking you to mark the ICA’s 40th anniversary with a donation. We need every single dollar, and we put every dollar to good use. Please help me ensure that every person who needs the ICA’s help, like I did in 2005, has the resources they need in the moments they need them most.

We need you more than ever. Will you help us continue our vital work?

Gratefully yours,
Claudia King
ICA Board Chair

P.S. Mark the ICA’s milestone 40th anniversary with a gift today at ichelp.org/ICALegacy. We can’t do it without you!

The ICA is the only nonprofit organization dedicated to improving the quality of healthcare and lives of people living with IC/BPS and is a 501(c)(3) organization (EIN 13-3292137).

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Calling for Applications for the ICA Medical Advisory Council https://www.ichelp.org/calling-for-applications-for-the-ica-medical-advisory-council-2/?utm_source=rss&utm_medium=rss&utm_campaign=calling-for-applications-for-the-ica-medical-advisory-council-2 Fri, 06 Sep 2024 01:45:31 +0000 https://www.ichelp.org/?p=7866 The ICA is calling for applications from leaders in interstitial cystitis/bladder pain syndrome (IC/BPS) health care and research to advise and support the activities of the ICA by serving on…

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The ICA is calling for applications from leaders in interstitial cystitis/bladder pain syndrome (IC/BPS) health care and research to advise and support the activities of the ICA by serving on its Medical Advisory Council (MAC) for a three-year term.

The MAC plays a leadership role by providing medical and scientific expertise to advance the ICA mission. To learn more and/or apply, visit our ICA Recruiting Medical Advisory Council Members webpage.

The deadline to apply is Friday, September 20, 2024.

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IC Awareness Month: Free Expert Content – Register Now! https://www.ichelp.org/ic-awareness-month-free-expert-content-register-now/?utm_source=rss&utm_medium=rss&utm_campaign=ic-awareness-month-free-expert-content-register-now Wed, 14 Aug 2024 22:19:18 +0000 https://www.ichelp.org/?p=7785 Join the ICA in commemorating 40 years of dedication to the IC/BPS community! Our anniversary campaign aims to raise $40,000 to expand advocacy, educate and empower patients, and build supportive…

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Join the ICA in commemorating 40 years of dedication to the IC/BPS community! Our anniversary campaign aims to raise $40,000 to expand advocacy, educate and empower patients, and build supportive communities. Your participation is crucial—every donation, big or small, and spreading awareness can make a profound difference. Creative fundraising events are also encouraged.

Register for our FREE monthlong event to receive weekly emails with resources and content from IC/BPS experts. You’ll also have access to 2 live webinars, providing valuable insights and support.

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