When diagnosed with a rare disease, patients can find hope by connecting with people who understand their experience. Many patient-centered organizations address this need by providing community, education, and advocacy for those affected by specific diseases. One example is the IgA Nephropathy Foundation (IGAN), an organization dedicated to finding a cure for IgA Nephropathy (IgAN). Iowans recently gained IGAN representation in Jessica (Jing) Danielson, a clinical research coordinator at University of Iowa Health Care. Danielson will serve as the first IGAN ambassador in both Iowa and the Philippines, spreading awareness about IgA Nephropathy and the resources available to those it impacts.

IgA Nephropathy is a chronic kidney disease with no known cure. It develops when the antibody immunoglobulin A (IgA) accumulates in the glomeruli—the kidney’s filtrating blood vessels. Continued buildup impairs kidney function over time, with 1 in 5 patients developing kidney failure within 10 years of an IgAN diagnosis. With a mission to find a cure for the disease, the IGAN Foundation’s robust patient community helps build a strong support network and secure funding for research.

UI clinical/health care research associate Christine Zabawa, RN, BSN, NREMT-P, introduced Danielson to the foundation and nominated her for the IGAN ambassador position.

“We are thrilled to have Jing as our IgAN ambassador. She is the ideal person for this role, being kind, selfless, and enthusiastic,” Zabawa said.

“She has kindly offered to share her personal journey with the disease to our patients and staff. Although IgAN is relatively rare in Iowa, it significantly impacts our patients’ lives. Having someone to provide one-on-one support can make a substantial difference, especially for those who are newly diagnosed.”

Danielson’s lived experience with IgA Nephropathy will allow her to provide unparalleled support during engagement with patients. When Danielson learned of her IgAn diagnosis, she was a 29-year-old balancing work as a new first-time parent. Her diagnosis preceded wider-scale improvements in treatment and the IGAN Foundation’s 2004 founding. Still, Danielson channeled her challenges with the disease into a hopeful message—one that emphasizes viewing illness as only one facet of self.

“The struggle really was feeling alone at the time. I don’t want anyone to feel alone after being diagnosed. I also want to give hope to others with IgA Nephropathy by showing that their diagnosis is just a part of them and not who they are entirely,” Danielson said. “Unlike today, where they can prevent the progression of IgAN, I had fewer resources. So, my disease progressed until I had my transplant. But it didn’t deter me, so I want to spread hope. Especially for people who get diagnosed at a young age—I want to motivate them to live a full life.”

As an IGAN ambassador, Danielson will connect with different stakeholders—like care providers, policymakers, and community partners—to promote awareness and funding for IgAN research. In doing so, Danielson will extend IGAN’s mission to her country of origin: the Philippines. For her work there, she plans to prioritize the development of clinical research opportunities, citing limited physician and patient resources and IgAN’s increased prevalence among Asian populations.

Danielson’s experience as a research coordinator will help her engage patients in clinical trial participation. But IgAN efforts are already underway at UI Health Care thanks to nephrologist and clinical associate professor Lama Noureddine, MD, the principal investigator for the university’s IgAN clinical trials.

“Dr. Noureddine has devoted considerable time to offering multiple clinical trials in the hopes of advancing research on this devastating disease,” Zabawa said. “She, along with Dr. Mony Fraer and the entire nephrology team have diligently worked to ensure our patients receive the best care and opportunities for managing this complex and unique disease.”

Noureddine intends for the University of Iowa to become a recognized leader in IgAN research and treatment. In the meantime, Danielson recommends that nephrologists direct patients with IgAN to the IgA Nephropathy Foundation website, where they can access a variety of resources, such as can patient and caregiver support groups and event information. By joining the foundation’s mission to find a cure, Danielson said patients will find hope along the way, too.