×
×

IgA Nephropathy Foundation Announces Launch of Medical and Scientific Advisory Board

May 25, 2022 The IgA Nephropathy Foundation (IGAN Foundation), a nonprofit dedicated to supporting patients with a rare autoimmune kidney disease called IgA Nephropathy, today announced its formation of a Medical and Scientific Advisory Board (Advisory Board). With the members’ diverse medical and scientific backgrounds, the Advisory Board will help inform and enhance the Foundation’s work in supporting IgA Nephropathy patients and their loved ones.

The Advisory Board will serve an invaluable role in guiding the IgAN Foundation’s leadership and board of directors to make decisions that are rooted in deep scientific and clinical understanding. Currently comprised of seven members, including medical professionals, researchers and experts in IgA Nephropathy, the Advisory Board will grow to no more than 20 members who will help advance the Foundation’s mission to find a cure for IgA Nephropathy, fund research, empower patients and build a strong support network for patients.

“At the Foundation, we strive to provide our community with the most up-to-date resources and support they need to navigate their condition,” said Bonnie Schneider, co-founder and director of the IGAN Foundation. “With the Advisory Board’s support, we can ensure we continue to bring medically and scientifically sound advice and resources to our members. I am so grateful to this committed team of experts for their support in driving our work forward.”

IgA Nephropathy is an autoimmune disease that attacks the kidneys. It occurs when abnormal antibody immunoglobulin A’s (IgA) are produced, causing other protective antibodies to form a complex with the IgA in the kidney and trigger an immune system attack that prevents normal kidney function. It is estimated that 20%-40% of patients with the disease will need dialysis and/or a kidney transplant to survive.

“It is very encouraging to see the marked increase in clinical research on IgA Nephropathy, which has had no treatment until the approval of the first-ever treatment for IgA Nephropathy in late 2021. Accurate understanding of this rare condition by both patients and clinicians is critical as the medical community unites to research a cure,” said Jonathan Barratt, MD, chairman of the Advisory Board and Mayer Professor of Renal Medicine at the University of Leicester. “I am proud to partner with my fellow Advisory Board members to lend our shared knowledge and expertise to the IGAN Foundation to enhance patients’ understanding of this disease and how to best manage their condition.”

The Advisory Board will provide insights and updates on the latest research and news pertaining to the treatment and care of IgA Nephropathy patients. The Advisory Board will also assist the Foundation by reviewing clinical trials, providing expert guidance and recommendations on the Foundation’s work, serving as media ambassadors and promoting the Foundation’s services among patients.

In addition to Dr. Jonathan Barratt serving as chairman, the Advisory Board currently includes: Kelly Chen, an IgA Nephropathy patient and nurse practitioner; Dr. Jared R. Hassler, a pathologist at The Temple University Hospital in Philadelphia; Dr. Li-Li Hsiao, creator of the Kidney Disease Screening and Awareness Program; Lauren Levy, MS, renal dietitian and owner of Happy Health Nutrition LLC; Dr. Daniil Shimonov, a specialist in nephrology and hypertension at The Rogosin Institute in New York, NY; and Whitney Simmons, APRN-CNP, a nurse practitioner supervisor at an ambulatory infusion center in Oklahoma City, OK.

For more information about the Medical and Scientific Advisory Board, visit https://igan.org/medical-scientific-advisory-board/

***

About the IgA Nephropathy Foundation:

As the only dedicated patient advocacy group for people affected by IgA nephropathy, the IgA Nephropathy Foundation’s mission is to be a patient-centric organization focused on finding a cure for IgA nephropathy. Using the power of the patient community, we are focused on funding research, using patient advocacy to empower our patients, and building a network of support. As a patient-run organization, we will work together with the hope of finding better treatment options and the ultimate cure. By patients, for patients. To learn more, visit www.igan.org.

MEDIA CONTACTS

Bonnie Schneider, bonnie@igan.org

Collin Walden, collin.walden@curastrategies.com

References

  • Hall, Y.N., Fuentes, E.F., Chertow, G.M. et al. Race/ethnicity and disease severity in IgA nephropathy. BMC Nephrol 5, 10 (2004). https://doi.org/10.1186/1471-2369-5-10
  • Kiryluk K, Li Y, Sanna-Cherchi S, Rohanizadegan M, Suzuki H, et al. (2012) Geographic Differences in Genetic Susceptibility to IgA Nephropathy: GWAS Replication Study and Geospatial Risk Analysis. PLoS Genet 8(6): e1002765. doi:10.1371/journal.pgen.1002765