Osama W. Amro, M.D., MS, is the director of the Swedish Polycystic Kidney Disease Center of excellence at Swedish Medical Center in Seattle.

Dr. Amro is a member of the American Society of Nephrology and a National Kidney Foundation Advisory Board member serving the Pacific Northwest. His research and clinical interests include renal pathophysiology and PKD. He’s served as an investigator on several clinical trials of investigational treatments for ADPKD.

Dr. Amro has coauthored book chapters on PKD as well as articles published in the peer-reviewed journals like Seminars in Dialysis and American Journal of Kidney Diseases. He’s been a reviewer for the American Journal of Transplantation, Journal of the American Society of Nephrology, Clinical Journal of the American Society of Nephrology, and Case Reports in Nephrology and Urology.

Melanie Betz, MS, RD, CSR, CSG, FAND, is a registered dietitian specializing in kidney stones. She’s the founder of The Kidney Dietitian, an online platform that provides easy-to-understand, evidence-based information about kidney stones and kidney disease.

Her research, which is published in peer-reviewed journals, investigates patient knowledge and adherence to renal diets, plant based diets in kidney disease, and the role of nutrition in kidney stone prevention. 

She volunteers for the National Kidney Foundation of Illinois and the Renal Practice Group, a practice group of the Academy of Nutrition and Dietetics. You can find her on Instagram @the.kidney.dietitian.

Susan is a seasoned executive with more than 25 years of experience leading strategic initiatives and programs at national, regional and local levels for nonprofit organizations. She has an extensive track record as a leader focused on building and empowering high-performing teams with an ability to synthesize the cross-departmental needs of organizations for mission funding, galvanizing supporters, and growing revenue. Prior to joining the PKD Foundation, Susan served as the vice president of development operations at JDRF International, overseeing revenue growth and resource development across core fundraising programs. In addition to JDRF International, she has also served in various leadership roles for March of Dimes, Autism Speaks, and the American Cancer Society. Susan holds a bachelor’s degree in Media Communications from Webster University – St. Louis.

Fouad T. Chebib, M.D., FASN is a nephrologist and assistant professor of medicine at Mayo Clinic, Florida. He’s the head of Mayo’s PKD Center and established their tolvaptan clinic. Additionally, he’s the chair of our Education Advisory Panel.

Dr. Chebib’s clinical and research focus is advancing managing PKD and its complications; providing coordinated, multidisciplinary care; and clinical trials and translation of novel treatments for ADPKD.

When it comes to research, his lab examines molecular mechanisms that lead to cyst formation in ADPKD patients and explores targeted treatment options. Dr. Chebib is specifically interested in the intracellular calcium and cAMP signaling.

Dr. Neera Dahl is a Senior Associate Consultant and Director of the Mayo PKD Center of Excellence. She completed an MD and PhD from Tufts University School of Medicine, and then residency and fellowship at the Beth Israel Deaconess Medical Center, in Boston, MA. She had been instrumental in developing the Yale inherited kidney disease clinic and has conducted clinical trials in ADPKD since 2007. Dr. Dahl is a member of the Mayo PKD Center Steering Committee, and on the Scientific Advisory Board for the PKD Foundation.

Patrick Dean, M.D., is the surgical director of the kidney/pancreas transplant program and a consultant and associate professor of surgery in the Division of Transplantation Surgery at the Mayo Clinic.

He’s a fellow of the American College of Surgeons; and a member of both the American Society of Transplant Surgeons, the American Society of Transplantation, a member of the Membership and Professional Standards Committee of UNOS. Currently, he’s the chairperson of the Program Accreditation Committee of the ASTS Transplant Accreditation and Certification Council.

Dr. Dean’s clinical and research interests include kidney and pancreas transplantation, preemptive kidney transplantation, living donor kidney transplantation, transplantation for polycystic kidney disease, and antibody-mediated kidney graft injury.

Like many, Glenn Frommer had no idea what PKD was before being diagnosed with ADPKD. But now that it’s part of his daily life, he’s committed to supporting our PKD community.

Beyond his successful careers in chemical engineering and private equity, Glenn is a passionate philanthropist. He’s actively involved with the PKD Foundation, serving on both the Research Grant Committee and Advocacy Champions Network. In support of the PKDF, his 2022 100-day RideForPKD bike ride across America raised both awareness of PKD and $654,000 in research funding.

With his children and wife of 39 years, Beth, at his side, he remains 100% committed to using his resources and experiences to benefit the PKD community in its fight to #endPKD.

Lisa M. Guay-Woodford, M.D., is the McGehee Joyce Professor of Pediatrics at Children’s National Hospital and the George Washington University School of Medicine and Health Sciences (GW). She also serves as the associate vice president for Clinical and Translational Research at GW.

Dr. Guay-Woodford is an internationally recognized pediatric nephrologist focused on identifying clinical and genetic factors involved in the pathogenesis of inherited renal disorders, most notably ARPKD. Her laboratory participated in the identification of the human ARPKD gene as part of an international consortium. In addition, her laboratory was the first to identify a candidate modifier gene for ARPKD. For her contributions, she was awarded the Lillian Jean Kaplan International Prize for Advancement in the Understanding of PKD given by the PKD Foundation and the International Society of Nephrology.

Dr. Guay-Woodford currently serves as serves as director at the Children’s National Research Institute Center for Translational Research and the CTSA-funded Clinical and Translational Science Institute at Children’s National (CTSI-CN) as well as co-director of the UAB Childhood Cystic Kidney Disease Core Center (UAB CCKDCC).

Ashima Gulati, M.D., Ph.D., is a pediatric nephrologist with research interest in inherited kidney diseases, particularly polycystic kidney disease. Dr. Gulati trained at the Yale School of Medicine where she also completed a Ph.D. in investigative medicine.

Dr. Gulati’s research focuses on human exome-based investigation of genetic kidney diseases and using mouse and zebrafish as disease models for investigating vascular complications in ADPKD. Her clinical interests include integration of genetic knowledge to improve the well-being of children with polycystic and inherited kidney diseases.

Dr Amit Gupta is an expert in Robotic Surgery and Urologic Oncology. Dr. Gupta has extensive training and experience with open, robotic and laparoscopic surgeries. He has a special interest in performing robotic nephrectomies for Polycystic Kidney Disease.

Dr Gupta did his urology residency at University of Texas Southwestern Medical Center, Dallas, TX and his Urologic Oncology fellowship at Memorial Sloan Kettering Cancer Center, New York. Dr. Gupta was then recruited to the University of Iowa, where he established an Advanced Robotics Surgery Program and performed novel and complex surgeries for urological cancers. In 2016, Dr. Gupta was recruited to the Cedars-Sinai Medical Center in Los Angeles, where he chaired the Robotic Surgery Steering Committee and advanced the robotic surgery program at Cedars-Sinai. In 2021, Dr Gupta founded his own practice: Beverly Hills Urology.

Dr. Gupta’s research interests include Robotic Surgery, novel surgical techniques, surgical technology, and clinical trials. He has published his research in high impact journals such as the Journal of Clinical Oncology, European Urology, Journal of Urology, Urology, Clinical Cancer Research etc.

Haewook Han, R.D., is a renal nutrition specialist in the Department of Nephrology at Atrius Health/Harvard Vanguard Medical Associates and Frances Stern Nutrition Center at Tufts Medical Center. Additionally, she’s the director of the master’s and dietetic internship program at Tufts University’s Friedman School of Nutrition.

Dr. Han provides personalized nutrition education for patients with early stages of chronic kidney disease (CKD) to help slow progression and the need for dialysis. In addition, she’s a specialist in kidney stones. She’s edited the a kidney stones textbook, developed CKD diet education curriculum, and instructs patients and fellow professionals in healthy eating habits for CKD patients.

Dr. Han has been a member of the National Kidney Foundation, the Committee on Renal Nutrition, and is a member of the Renal Practice Group at the Academy of Nutrition and Dietetics. She’s received numerous awards for her work in nutrition management of CKD and kidney stones.

Christian Hanna, M.D., is an assistant professor of pediatrics in the Division of Pediatric Nephrology and Hypertension at the Mayo Clinic. He’s also the medical director of Mayo Clinic’s Pediatric Cystic Kidney Disease Clinic, where comprehensive care is provided to pediatric patients with cystic kidney disease.

In his research, Dr. Hanna focuses on pediatric cystic kidney diseases, including ADPKD and ARPKD. His research involves identifying novel biomarkers and developing effective therapies to prevent pediatric patients with ADPKD from progressing to kidney failure as adults.

Erum Hartung, M.D., MTR is a pediatric nephrologist at Children’s Hospital of Philadelphia (CHOP) and an assistant professor of Pediatrics at the University of Pennsylvania.

Dr. Hartung’s clinical and research focus is in PKD, particularly autosomal recessive polycystic kidney disease (ARPKD). She co-directs the combined kidney/liver program at CHOP, which specializes in the care of children with ARPKD and other genetic kidney/liver diseases and ciliopathies. Her research aims to accelerate the development of new treatments for ARPKD through observational and database studies to better define the natural history and complications of ARPKD, and through imaging studies to develop new biomarkers of kidney and liver disease progression.

Dr. Hartung serves on our Science Advisory Committee and PKD in Children Council, and was the lead author of our ARPKD Patient Handbook.

My name is Linda Herman, I’ve served as a PKD Connect Ambassador for Portland, OR for the past 4 years. My husband and 18-year-old daughter both have rapidly progressing PKD. We’ve experienced many complications of PKD, including brain aneurysms, arachnoid cysts, ruptured diverticula, and hernias. My husband had a deceased donor transplant in 2009. My own career in the medical field has given me great insight into how to navigate PKD issues. I previously worked for GE Healthcare, surgical and vascular imaging, as a Clinical Imaging Specialist, and currently am a Client Relations Manager for Imaging Biometrics. IB specializes in MRI software for brain tumor analysis.

Our family loves volunteering and has participated in many clinical trials. Our goal is that PKD remains in the background as we live life as normally as possible, cherish every moment, and pass along what we’ve learned to others on this journey…especially, since our adopted daughter is named Journey!

Elise is the vice president of research programs at the PKD Foundation. She led the design and implementation of the ADPKD Registry along with members of the clinician, researcher, and patient communities.

Before joining the PKDF, Elise worked as a clinical research coordinator at Tufts Medical Center on PKD studies, such as REPRISE (the tolvaptan clinical trial), as well as completing an epidemiology fellowship at the National Cancer Institute. She’s excited to be able to contribute to patient-centered research in her position at the PKDF.

Naim Issa, M.D., is a transplant nephrologist and consultant at the Mayo Clinic in Rochester, Minnesota, where he serves as the Practice Chair of the Division of Nephrology and Hypertension. He’s also an associate professor of Medicine at the Mayo Clinic College of Medicine and Science.

Dr. Issa obtained his internal medicine and nephrology training at the Cleveland Clinic in Ohio, and subsequently pursued further specialization in transplant nephrology at the Mayo Clinic. His primary focus areas include kidney and pancreas transplantation and living kidney donation.

Jeffrey Klein, M.D., is certified by the American Board of Internal Medicine with a sub-certification in nephrology. He completed a fellowship in nephrology at Baylor College of Medicine. He earned his medical degree from the University of Kansas School of Medicine and completed his residency at Baylor College of Medicine.

Kayla Kolbert is a board-certified genetic counselor in Mayo Clinic’s Center for Individualized Medicine which focuses on innovation in many areas including access to genetics services. Since 2021, Kayla has helped counsel and facilitate genetic testing for patients across many specialty indications within the Program of Rare and Undiagnosed Disease (PRaUD). These include nephrology indications such as polycystic kidney disease, nephrotic syndrome, focal segmental glomerulosclerosis, nephrolithiasis, hypokalemia, and more. Prior to this, Kayla was a laboratory genetic counselor in Mayo’s Department of Laboratory Medicine and Pathology supporting utilization management, variant analysis, reporting, and test development.

Kayla participates in many educational endeavors including as a clinical rotation supervisor for the University of Minnesota Genetic Counseling Program’s Mayo-track students. In 2023, she was promoted to Instructor in Medical Genetics in the Mayo Clinic College of Medicine and Science. She has given lectures to many different interest groups, from nurses to bioethics students to GC students. Kayla received her BA in Biology from Luther College and Master of Genetic Counselor Studies degree from University of Wisconsin-Madison.

Ronak Lakhia, M.D. is an assistant professor of medicine in the Division of Nephrology at the University of Texas, Southwestern Medical Center in Dallas.

Dr. Lakhia leads the PKD Clinic at UT Southwestern where individuals with PKD and other genetic kidney disorders receive comprehensive individualized care. Her research laboratory focuses on understanding the metabolic and epigenetic factors underling ADPKD disease severity.

Dr. Lakhia’s laboratory is supported by grants from the NIH, PKD Foundation and American Society of Nephrology Kidney Cure Grants Program.

Kerri McGreal, M.D., is a general nephrologist interested in the full spectrum of kidney disease. She works in the University of Kansas Health System as an assistant professor in the Department of Nephrology and Hypertension. Additionally, she’s the PKD Center of Excellence director for the University of Kansas Health System.

Dr. McGreal focuses on treating ADPKD, acute kidney injury (AKI), chronic kidney disease (CKD), hypertension, and electrolyte and acid-base abnormalities.

Dr. McGreal is also involved in multiple levels of research for ADPKD, including clinical trials focused on discovering treatments that slow cyst growth. Her translational research is based on finding reliable biomarkers to assess disease progression and predicting decline in kidney function.

Dr. Mrug is a Professor of Medicine in the Division of Nephrology at the University of Alabama at Birmingham (UAB) where he trains the next generation of physicians and scientists. Dr. Mrug is recognized as one of “Top Doctors” by Castle Connolly Medical Ltd. He co-founded and directs the UAB Polycystic Kidney Disease (PKD) Clinic and oversees clinical PKD research activities at UAB (since 2009). This includes the CRISP study, an NIH-funded collaborative effort between Emory University, University of Kansas, Mayo Clinic, UAB and University of Pittsburgh that has led to many seminal discoveries. He also coordinated the REPRISE clinical trial for UAB; outcomes of this study played a crucial role in the recent FDA approval of tolvaptan as the first treatment for autosomal dominant PKD (ADPKD). Dr. Mrug’s clinical research interests are centered on the development of statistical models for prediction of the decline in the kidney function in patients with ADPKD over time and better identification of those patients that may benefit most from therapeutic interventions. Dr. Mrug’s basic research (funded since 2005) is focused on the identification of molecular pathways that modulate progression of renal cystic diseases, especially those related to inflammation. He also directs the Therapeutics Development and Screening Core, one of four cores within the UAB Hepatorenal Fibrocystic Disease Core Center (HRFD CC). The UAB HRFD CC is one of four NIH-funded P30 centers focused on PKD, with the other three PKD Core Centers being located at University of Kansas, Mayo Clinic and University of Maryland. The mission of these centers is the development of innovative technologies to advance PKD research and providing access to these resources to other scientists to help them promote PKD research in institutions where such resources are not available. The activities of the UAB HRFD CC are centered on Autosomal Recessive PKD (ARPKD) and other recessive fibrocystic disorders affecting the kidney and liver. Dr. Mrug also serves as the Scientific Advisory Committee Chair for the PKD Foundation’s Board of Trustees.

Meg Munits is a PKD caregiver for her husband and her 12 year old son, who both have ADPKD. Meg also has two other boys (13 and 8 years old) who do not have ADPKD. She and her family live in Westchester, New York, a suburb just north of Manhanttan. Meg has been a PKDF New York City Community Ambassador for the past seven years and recently become certified as a Register Dietitian (RD) with a speciality in pediatrics and PKD. It has been a long time goal for her to help families navigate nutrition therapy for their growing children with kidney disease

Ronald Perrone, M.D., is a member of the Division of Nephrology at Tufts Medical Center, Scientific Director of the Clinical and Translational Research Center, where he’s also a professor of medicine.

He’s served as the clinical lead of the PKD Outcomes Consortium (PKDOC), whose work led to qualification of total kidney volume (TKV) as a prognostic biomarker by FDA and EMA. Dr. Perrone has participated in various clinical trials, including serving as the Boston site principal investigator for the HALT PKD study, the TEMPO 3/4 and REPRISE trials of tolvaptan in ADPKD, the TAME-PKD study of metformin, and the Venglustat study. Today, he’s the Boston site principal investigator for Tesevatinib and Bardoxolone (Falcon) studies.

With his long-standing, wide-ranging interest in ADPKD, Dr. Perrone is now primarily focused on clinical trials and the use of TKV as a potential regulatory endpoint.

Amber Phipps is a full-time working mother in Bondurant, Iowa who cares for a nine-year-old son with Autosomal Recessive Polycystic Kidney Disease (ARPKD) and Congenital Hepatic Fibrosis. In 2018, she also had the honor of successfully donating her kidney to her son.

Through her own experience as a donor and caregiver, she has become well versed in navigating hospital visits, medical appointments, and advocating for the best care for her children.  Amber’s journey has not only shaped her as a mother to her son and healthy 12-year-old daughter but has also given her a distinctive outlook on the importance of self-care, finding community in unique ways, and nurturing your passions.

Alix Piccirilli is a Change Management Consultant for the World Bank Group, with over 20 years in the information technology and banking industries. She is a native of New York, a military spouse and mom of 2 boys and a mini dachshund, they currently live in Northern Virginia.  

Alix’s oldest son was diagnosed with ARPKD in 2017 and since then has become a relentless advocate for PKD families. She volunteers in multiple capacities for the PKD foundation including the ARPKD Task Force, Education Advisory Panel, Advocacy Champions Network, PKD Walks and is a active member of the PKD in Children Parents’ Chapter Facebook Group.  

Coming soon!

Dallas Reed, M.D., FACMG, FACOG is a double-boarded obstetrician/gynecologist and medical geneticist and works as an associate professor of OB/GYN and Pediatrics at Tufts University School of Medicine. Beyond being a professor, she’s the division chief of genetics; director of perinatal genetics; and attending physician in OB/GYN at Tufts Medical Center.

Dr. Reed’s has a passion for equity and inclusion, telemedicine, genetics education, and providing sensitive and culturally competent care to women and families during pregnancy and when confronted with uncertainty around a genetic diagnosis.
Dr. Reed has extensive experience in educating medical students, genetic counseling students, residents, fellows, physicians, and other medical professionals in various prenatal, cancer, and clinical genetics topics. She conducts research around genomic sequencing in stillbirth and seriously ill newborns with possible genetic disorders.

Coming soon!

Sixto Giusti Torres, M.D., is the director of the Hispanic Transplant Program at Colorado University School of Medicine at Anschutz Medical Campus.

Prior to his current role, Dr. Torres was the medical director of the Kidney and Pancreas Transplant Program and the director of the transplant nephrology fellowship at Tulane University.

His clinical and research interests revolve around helping provide culturally appropriate transplant care to minorities.

Terry Watnick, M.D., is the Joan B. and John H. Sadler Professor of Nephrology at the University of Maryland School of Medicine.

Dr. Watnick has a laboratory that focuses on understanding the factors that cause aneurysms in ADPKD. In addition, she’s been an investigator in several multi-center clinical trials recruiting patients with ADPKD, including TEMPO, REPRISE, and TAME. Dr. Watnick is the principal investigator (PI) of the NIH funded Maryland Polycystic Kidney Disease Research and Translation Core Center. She’s also the PI of the Central Coordinating Site for the Polycystic Kidney Disease Research and Translation Core Centers.

Dr. Watnick previously served as the chair of the PKD Foundation’s Scientific Advisory Committee (SAC) and was a member of the board of trustees. For her dedication and work in the field of PKD, she was the 2023 recipient of the Lillian Jean Kaplan International Prize for Advancement In the Understanding of Polycystic Kidney Disease.

Shawna Webb is a certified public accountant at Triple H Enterprises. She graduated from West Virginia University with a Bachelors of Science in Business Administration and went on to earn her Master of Accountancy.

She is a West Virginia native and still resides in the state. Her hope is to bring awareness and resources to underserved medical populations with an illness such as PKD.

Shawna was diagnosed with autosomal recessive polycystic kidney disease and congenital hepatic fibrosis (ARPKD/CHF) at the age of four. She is actively involved with the PKD Foundation and wishes to continue being an advocate for PKD patients and their families.