Kidney Week 2025 Annual Meeting-Success Stories in Glomerular Diseases: From Bench to Bedside, Including the Celeste Castillo Lee Endowed Lectureship

Video Transcription

Video Summary

The session opened the American Society of Nephrology’s “success stories in glomerular diseases,” featuring the Celeste Castillo-Lee Endowed Lectureship honoring Castillo-Lee’s legacy of meaningful patient engagement and patient-centered research.<br /><br />Lecturer Bonnie Schneider, co-founder/director of the IgA Nephropathy Foundation, described becoming a “mom on a mission” after her 13-year-old son was diagnosed with IgA nephropathy in 2004 amid scarce information and no treatments. She contrasted this with her daughter’s contemporaneous Hodgkin lymphoma diagnosis, where clear treatment pathways existed. Schneider founded the IgA Nephropathy Foundation to build community, educate patients, fund research, and advocate for access. She highlighted milestones including organizing an FDA patient-focused drug development meeting that helped accelerate clinical trials and approvals, using social media to boost trial enrollment, creating extensive educational resources and support conferences, and launching the IGAN Hope registry to support research. With multiple IgA nephropathy drugs now approved and more in review, she emphasized global access via an international ambassador initiative. Her advice to parents facing rare diseases: persist, find others, and “keep swimming.”<br /><br />Subsequent talks reviewed therapeutic progress in other glomerular diseases. Dr. Brad Rovin summarized lupus nephritis advances targeting B cells (obinutuzumab, belimumab) and emerging CAR-T cell data suggesting potential durable, drug-free remissions, while noting safety and unanswered questions. Dr. Carla Nester reviewed complement-mediated diseases: eculizumab’s impact in atypical HUS and major 2025 breakthroughs in C3 glomerulopathy with newly approved complement inhibitors (factor B inhibition and C3 inhibition), alongside remaining needs for precision selection and transplant/pediatric data. Dr. Rachel Jones highlighted ANCA vasculitis advances including rituximab, steroid-sparing avacopan (C5aR blockade), and ongoing trials of deeper B-cell and complement strategies.

Asset Subtitle

Moderator(s): Gabriel Cara-Fuentes, Dawn Caster

Presentation(s):

Importance of Patient Advocate Partners to Get Discoveries to the Bedside: The Celeste Castillo Lee Endowed Lectureship - Bonnie Schneider
Lupus Nephritis - Brad Rovin
Atypical Hemolytic Uremic Syndrome and C3 Glomerulopathy - Carla Nester
ANCA-Associated Vasculitis - Rachel Jones

ASN gratefully acknowledges Travere Therapeutics and several of Celeste's family members, friends, and colleagues for support of the Lee Endowed Lectureship.

Support for all sessions in the Glomerular Diseases Learning Pathway is provided by an educational grant from Vera Therapeutics, Inc.

Meta Tag

Date 11/6/2025

Pathway 1 Glomerular Diseases

Session ID 507309

Keywords

American Society of Nephrology

glomerular diseases

Celeste Castillo-Lee Endowed Lectureship

patient engagement

patient-centered research

IgA nephropathy

IgA Nephropathy Foundation

FDA patient-focused drug development

clinical trial enrollment

IGAN Hope registry

lupus nephritis

B-cell targeted therapy

CAR-T cell therapy

complement-mediated kidney disease

C3 glomerulopathy