May 2026 Newsletter
Welcoming Dr. Graber to Our Staff
PKD-Free Alliance is proud to continue expanding our team and mission-driven efforts with the addition of Melanie Graber, MD, as Part-Time Clinical Outreach Coordinator.
Dr. Graber, a rheumatologist in New York, brings a compassionate, patient-centered approach to medicine and a strong commitment to helping individuals navigate challenging healthcare journeys. Her clinical background and passion for supporting patients living with chronic conditions will further strengthen the Alliance’s growing educational and outreach initiatives. Additionally, her personal experience with in vitro fertilization will serve as an invaluable asset when connecting with members of our community.
"So much of what I do as a physician is helping people navigate complex, emotional healthcare journeys and that’s exactly what PKD-Free Alliance is all about. I’ve been through IVF myself, so I know how overwhelming it can feel, and how much it means to have someone in your corner who truly gets it. I’m so excited to be part of this community and to help more families find their way to the options and support they deserve," said Dr. Graber.
As our organization continues to grow nationally, additions like Dr. Graber reflect our commitment to building a multidisciplinary network focused on empowering PKD patients with education, resources, and access to reproductive options that can help prevent PKD from being passed to future generations.
We are excited to welcome Dr. Graber to the PKD-Free Alliance family and look forward to the expertise and perspective she will bring to our mission.
Mental Health & Emotional Wellness
Living with polycystic kidney disease can impact far more than physical health. From the moment of diagnosis, many individuals and families experience anxiety, grief, uncertainty, and emotional exhaustion as they navigate a lifelong genetic disease that can affect multiple generations. These emotions are valid, can evolve over time, and they deserve attention and support.
At PKD-Free Alliance, we believe mental and emotional wellness are critical parts of overall health.
In honor of Mental Health Awareness Month, we are proud to introduce a new section on our website focused on mental health and emotional wellness in PKD, featuring support resources, educational information, and additional reading for patients and families.
SBN Share Interim Clinical Trial Results
Earlier this month, Santa Barbara Nutrients (SBN) announced the 12-month interim results from an ongoing clinical trial evaluating the safety and efficacy of SBN’s medical food KetoCitra® in combination with a structured ketogenic nutrition and lifestyle program in individuals with moderate-to-advanced ADPKD.The results were previously presented in late March at the World Congress of Nephrology held in Yokohama, Japan.
Published Research Articles
A study in Nephrology Dialysis Transplantation compared people in three groups: those with PKD taking tolvaptan, those with PKD not taking tolvaptan, and those without kidney disease. It found that while the drug helps to protect kidney function, the known side effect of increased urine output can negatively affect peoples’ daily lives and well‑being. The researchers created a new questionnaire to better understand the real‑world impact of this side effect on people taking the medication.
Research featured in the European Journal of Pediatrics followed 289 children (average age around 10 years) with ADPKD across four specialized centers in Europe. It found that visible blood in the urine was uncommon, but children who experienced it were more likely to develop high blood pressure later on. This finding is important because it helps identify children who may need closer monitoring and earlier care to reduce future health risks.
A study published in the Journal of the American Society of Nephrology followed hundreds of people with early-stage ADPKD, most with normal kidney function, for many years to better understand who is at risk of kidney failure. Researchers developed a tool that uses common health information (like age, kidney function, imaging, and blood tests) to estimate a person’s risk of kidney failure up to 15 years in advance and found it predicted risk accurately. This predictive tool is helpful because ADPKD can progress very differently from person to person, and having a reliable way to anticipate risk can help guide earlier monitoring and treatment decisions.
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