ICA Spring 2024 Appeal Letter (8.5 X 1.5 In)

As we approach the close of another year, we’re filled with hope and excitement about the future of the Interstitial Cystitis Association (ICA). This year marks a pivotal moment in our journey—one that brings you closer to the heart of our mission than ever before.

For the first time in over a decade, our organization will be led by individuals who truly understand the trials and triumphs of our community. Claudia King and Laura Santurri, both of whom have faced the challenges of living with IC/BPS for over 20 years, are stepping into leadership roles and will be running the day-to-day operations of the ICA. With Claudia’s extensive experience in nonprofit management and Laura’s background in IC research and education, we are uniquely positioned to elevate our mission and serve you better.

Claudia and Laura have been dedicated members of the ICA Board of Directors, with Laura recently serving as Chair and Claudia currently in that role. They both turned to the ICA for support during their own journeys, and now, they are here to guide and support you—whether you’re a patient who’s newly diagnosed, has lived with IC/BPS for years, or are still searching for answers; whether you are a provider who serves IC/BPS patients and/or researches to help find new diagnostic tools, new treatments, and a cure; whether you are a friend, family member, or spouse of an IC/BPS patient who is searching for the best ways to help your patient through the life-altering challenges of living with IC/BPS; or, whether you support the ICA in honor or memory of a patient who has touched your life.

Amid this transformative leadership change, we find ourselves facing an urgent challenge. This year, we anticipated a significant federal grant to sustain our most vital programs. Unfortunately, the grant didn’t come through, and we now need your help and immediate support to bridge a $200,000 gap left by the lack of federal funding. As we move forward, we are actively diversifying our funding sources to ensure that a grant or other source never again threatens our ability to provide the many meaningful services that our community needs and deserves.

Your generous contributions will directly empower our essential services. We’re proud to share a few of our achievements in 2024:

  • Expert Webinar Series: This year, we hosted 10 webinars covering critical research and treatment discussions, engaging 475 patients and supporters. While we previously charged a nominal fee ($25) for webinars, our patient community has asked us to reduce/eliminate the cost so that more patients and supporters can attend and benefit from our experts.
  • Advocacy for Research Funding: We tirelessly work to secure funding for continued research into IC/BPS. In addition to meeting Congressional Representatives in Washington, D.C., to share personal stories of IC/BPS and why funding is so important, we also share with our representatives on a local level and raise awareness through proclamations declaring IC Awareness Month throughout the country. Our efforts have kept funding for IC research level and have also kept IC/BPS on the important PRMRP (Peer-Reviewed Medical Research Program) list. The purpose of this program is to encourage, identify, select, and manage medical research projects of clear scientific merit that lead to impactful advances in health care of active-duty Service Members, Veterans, military beneficiaries, and the American Public. Inclusion on this list opens up additional funding sources for research that has the potential to profoundly impact the development and implementation of medical devices, drugs, and clinical guidance for specific conditions.
  • ICA Update Publication: Our triannual publication keeps patients informed on vital topics and helps combat feelings of loneliness and isolation. In 2024, over 3,000 patients received a copy of our award-winning periodical, providing them with meaningful education on IC/BPS and related subject matter.
  • Our online support community has blossomed to over 6,100 members, creating a vibrant space for sharing experiences and offering support.
  • Our website has welcomed more than 2.4 million visitors this year, affirming our role as the trusted resource for reliable information.

As proud as we are of our services, we’re even prouder to share the real impact felt by a few of our IC/BPS warriors. Kelly R. shared, “The ICA is the only place I trust to give me real information. I know they care about people like me, and they’ve made my journey with IC a little less traumatic.” Kelly’s sentiments are the ones we strive to create for every patient with whom we interact. A patient supporter, Craig B. told us, “I had no clue where to go to help my wife. I’m grateful the ICA was here for us. We have both found support and have learned so much!”

Claudia emphasizes, “The ICA is the only nonprofit in the US that supports patients of IC/BPS. Patients consistently come to us for reliable information and a supportive community when they feel they have nowhere else to turn.” We need your help to continue delivering meaningful and life-changing services to patients, family members, and healthcare providers at ever-increasing levels. Each and every day, more people are diagnosed or learn of the symptoms of IC/BPS and seek reliable educational content and support.

As we look towards the beginning of a new year, we invite you to join us in this crucial moment. We ask you to please consider making a gift to support IC/BPS patients before December 31, 2024, and to share our mission with your network. Together, we can ensure that the ICA remains a beacon of hope and the trusted support for all affected by IC/BPS.

Thank you for your unwavering commitment to our community. Your support is more vital than ever, and with your help, we will achieve extraordinary things.

Respectfully,
Your ICA Family
Claudia King and Laura Santurri
Interstitial Cystitis Association