Reflecting on my presentation at ASN Kidney Week 2025: A call to advance treatment options for children with kidney diseases

Innovation in kidney care has transformed outcomes for adults — but children continue to wait. This month, I had the privilege of presenting at the American Society of Nephrology's (ASN) Kidney Week 2025 as part of a panel titled, "Upping Our Game: Advances in Clinical Trials for Pediatric Patients." Pediatric nephrology has long trailed behind adult nephrology in both available therapies and clinical trial opportunities. The session brought together patients, parents, caregivers, physicians, researchers, industry members and policymakers committed to changing that trajectory and who advocate for a future where children are no longer an afterthought in clinical innovation.

My presentation, "A Parent's Request to Increase Treatment Options for Children with Kidney Diseases," allowed me to speak from my personal experience as a parent and my professional role in kidney health advocacy. I shared my daughter Conley's journey with kidney disease and my living kidney donation to her. Her kidney disease was caused by twin-to-twin transfusion syndrome (TTTS), a rare in-utero complication unique to identical twin pregnancies that often leads to kidney disease. Because of TTTS, my twins were born four months early, and the extreme prematurity further damaged one of their kidneys. 

While my family's story is unique, the challenges it illustrates are shared by countless pediatric kidney patients — whether their disease is rare, congenital, genetic, glomerular or autoimmune. Like many other pediatric kidney conditions, TTTS has seen very few clinical trials over the last two decades, and none have explored drug-based therapies. The absence of innovation is not just a scientific gap — it is a lived reality for families searching for answers and options.

To bring parent and caregiver experiences into the conversation, I also shared findings from an informal survey of 100 parents/caregivers of children with kidney disease.

Key insights included:

• Parents generally felt included in treatment discussions, a positive sign of shared decision-making.
• 60% reported being offered only one treatment option for their child.
• 68% said they were not provided with support resources, such as educational materials, peer connections or support groups.

These responses highlight a critical need: families want information, options and support — and too often, they receive too little of each.

During the session, I also highlighted the comprehensive resources available through AKF to support families navigating pediatric kidney disease, including information on causes of kidney disease in children, treatment pathways and connections to pediatric support communities.

My call to action to the nephrology community was:

• Expand and accelerate pediatric clinical trials
• Increase diversity in clinical trials and support patients in disadvantaged communities who lack resources, health literacy and access to quality care
• Invest in innovative therapies beyond dialysis and transplant, and innovate immunosuppressant drugs that carry a significant compliance burden and often devastating side-effects
• Increase educational and emotional support for families
• Engage parents and children earlier in the design of pediatric studies
• Build strong, sustainable patient advisory boards
• Strengthen partnerships among parents, physicians, researchers, industry members, policymakers and patient organizations like AKF

The session was expertly moderated by William Smoyer, MD, vice president of clinical and translational research at Nationwide Children's Hospital, Columbus, Ohio and Howard Trachtman, MD, FASN, former chief of pediatric nephrology at NYU Grossman School of Medicine and a long-time leader in pediatric kidney research.

We also heard from several distinguished experts:

• Lynne Yao, MD, director of the division of pediatric and maternal health at the U.S. Food and Drug Administration (FDA) and a former pediatric nephrologist, who outlined regulatory strategies to advance treatments for children with rare diseases. Presenting alongside Dr. Yao was especially meaningful for me as she provided a nephrology consult to my daughter in the NICU 20 years ago!
• Cal Robinson, MBChB, who discussed innovative study designs for evaluating treatments in children
• Rona Smith, MD, MBBS, who highlighted opportunities for pediatric–adult collaboration to strengthen clinical trial feasibility and scientific impact

Participating in this session reinforced what so many families already know: children with kidney disease deserve more treatment options, more research and more hope. I am grateful to ASN for dedicating time and space to this critical conversation — and to the broader kidney community for continuing the work needed to ensure that the next generation of children receives better therapies than the last. I am proud to play a small part in AKF's mission to support pediatric patients and their families.