Lisa Bonebrake

Executive Director of Alport Syndrome Foundation

Lisa Bonebrake is an Alport syndrome patient, caregiver, advocate, and Executive Director of Alport Syndrome Foundation, a patient support organization led by and dedicated to individuals living with this rare genetic kidney disease. In 2014, after her youngest son was diagnosed with Alport syndrome, Lisa began writing grant applications, attending patient advocacy events, and planning patient programs for the organization as a volunteer. Her son's diagnosis led to the understanding of her own misdiagnosis stretching back more than four decades. With 30 years of experience in nonprofit administration, she joined the staff of Alport Syndrome Foundation in 2018. In 2021, her then 19-year-old son experienced ESRD and dialysis, and was given the gift of life through living kidney donation by his then 21-year-old brother. Lisa has published articles from the patient and caregiver perspective in the Journal of Glomerular Diseases and in the Clinical Journal of the American Society of Nephrology. She has advocated on Capitol Hill for legislation related to CKD and served on multi-stakeholder working groups for which she has presented findings to the Congressional Kidney Caucus and the Rare Disease Legislative Caucus. She also currently serves on the American Society of Nephrology's Kidney Health Initiative as a member of the Patient and Family Partnership Council. Lisa is motivated to help improve the lives of other patients and families living with kidney disease, both pre-and-post transplant, and to support much needed advancements in treatment options and/or cures for rare kidney conditions.

Steven Burke, MD

Senior Vice President (SVP) of Research & Development and Chief Medical Officer (CMO) at Akebia Therapeutics

Steven Burke, MD, is the Senior Vice President (SVP) of Research & Development and Chief Medical Officer (CMO) at Akebia Therapeutics, a company dedicated to improving the lives of people with kidney disease. Akebia markets Auryxia and Vafseo in the United States and is developing treatments for acute kidney injury, glomerular diseases, and conditions associated with premature birth.

Dr. Burke has extensive experience in medical research and drug development. Before joining Akebia, he served as SVP and CMO at Proteon Therapeutics, where he focused on treatments for kidney and vascular diseases. Prior to that, he was SVP of Medical and Regulatory Affairs at Genzyme, working on therapies for hyperphosphatemia, vascular calcification, secondary hyperparathyroidism, and glomerular diseases.

Earlier in his career, Dr. Burke held leadership roles at GelTex Pharmaceuticals, including Vice President of Clinical Research and Medical Director, where he played a key role in developing Renagel and Renvela for patients with kidney failure. He also worked at Glaxo Inc. and co-founded two companies specializing in treatments for iron-overload-related conditions. Dr. Burke earned his undergraduate degree from Harvard College and his medical degree from Weill Cornell University Medical College. He completed his residency and fellowship at Brigham and Women's Hospital. A recognized leader in nephrology, he is the inventor on multiple patents and has authored numerous publications on kidney disease diagnosis and treatment.

Christopher Chen, PhD

Vice President of Research Programs at the PKD Foundation

Dr. Chen is the Vice President of Research Programs at the PKD Foundation. He has more than 20 years of experience studying PKD and gene therapy. Prior to the PKD Foundation, Dr. Chen was the Assistant Director of Research Support at the Southwest National Primate Research Center. He has also worked for the start-up viral gene therapy companies Imanis and Dyno Therapeutics. Dr. Chen obtained his bachelor's degree in Genetic Biology from Purdue University and a PhD in Molecular and Human Genetics from Baylor College of Medicine. He completed postdoctoral research at Yale University and Mayo Clinic where he focused on identifying RNA and microRNA PKD biomarkers.

Kevin K. Chung, MD, FCCM, FACP

Chief Medical Officer of SeaStar Medical

Dr. Kevin Chung, a retired Colonel in the U.S. Army, is a renowned expert in multi-organ support and extracorporeal therapies. He is the Chief Medical Officer of SeaStar Medical, a medical technology company developing proprietary solutions to reduce the consequences of hyperinflammation on vital organs. Dr. Chung is responsible for the strategy, direction, and execution of SeaStar Medical's clinical development plans as the company develops and commercializes extracorporeal therapies that target the effector cells that drive systemic inflammation and secrete a range of pro-inflammatory cytokines that initiate and propagate imbalanced immune responses.

Prior to joining SeaStar Medical, Dr. Chung served as professor and Chair of the Department of Medicine, and professor of Surgery, at the F. Edward Hebert School of Medicine at the Uniformed Services University of the Health Sciences, Bethesda, Maryland. Earlier in his career, he served as Chief of the Department of Medicine at Brooke Army Medical Center in San Antonio. Dr. Chung deployed as the Chief, Intensive Care Unit, for the 86th Combat Support Hospital in Baghdad, Iraq 2008, and as Director, Joint Combat Casualty Research Team in Bagram, Afghanistan 2012.

He is a 1995 graduate of the United States Military Academy at West Point and a 1999 graduate of Georgetown University School of Medicine. After finishing a fellowship in Critical Care Medicine at Walter Reed Army Medical Center, Dr. Chung was assigned to the U.S. Army Institute of Surgical Research (USAISR) in San Antonio, Texas, where he served in the capacity of Medical Director of the Burn Intensive Care Unit, Task Area Manager of Clinical Trials, and the Director of Research for 12 years. Dr. Chung has authored over 300 peer-reviewed manuscripts, reviews, editorials, and book chapters, and has been an invited speaker for over 150 lectures internationally.

Tim Fitzpatrick

Founder of Signals Group

Tim Fitzpatrick is the founder of Signals Group, a leading media, research, and advisory platform advancing the future of kidney health. Through its flagship newsletter—read by over 15,000 people across 50 countries—Signals brings together the ideas, innovations, and investments shaping the field, from medical devices and diagnostics to digital health and care delivery. Previously, Tim co-founded and served as CEO of IKONA, a learning company that developed immersive education and training solutions for patients and frontline care teams, starting in kidney care. IKONA was deployed in over 250 dialysis clinics nationwide and recognized as a Top 200 EdTech startup globally in the GSV Cup (2022, 2023). Tim served as Principal Investigator on multiple federal SBIR research grants from the National Science Foundation and Department of Defense, authored seven publications on learning science and immersive technologies in nephrology, and built partnerships across government, academia, and industry. Tim's interest in healthcare began with his experience as a patient in the U.S. Navy and VA Health System. Before founding IKONA, he worked as an institutional equities trader at BMO Capital Markets in New York, where he covered 500 public companies with a focus on emerging technologies and media.

Kevin J. Fowler

The Voice of the Patient, Inc.

Kevin Fowler worked in the pharmaceutical industry for over 25 years in both the commercial and R&D organizations. His career has encompassed a breadth and depth of skills and experiences. During his pharma career, he demonstrated leadership in sales management, training, public affairs, global marketing, patient advocacy, and patient marketing. He formed his own patient advocacy and patient engagement consulting business in 2014, "The Voice of the Patient, Inc." His clients currently include Alexion, Bayer, Dimerix, eGenesis, Memo Therapeutics, Travere Therapeutics, Phreesia, and ProKidney. In 2017, Kevin was selected to be a Patient Editor, Clinical Journal of the American Society of Nephrology. In 2023, he was asked to serve a second term as Patient Voice Editor. In 2021, Kevin was awarded the American Society of Transplantation Transplant Advocacy Award. He has contributed or been primary author in over 25 articles published in the American Journal of Kidney Disease, American Journal of Transplantation, Clinical Journal of American Society of Nephrology, and Kidney Medicine. Based upon his personal experiences of having a pre-emptive kidney transplant in 2004, he has a deep passion for patient advocacy and patient engagement. Kevin brings the patient voice to several organizations as a volunteer:

• Board of Directors, Kidney Health Initiative
• Kidney Research Institute, Patient Advisory Committee
• National Kidney Foundation, Coalition for Kidney Health
• Board of Directors, Improving Renal Outcomes in Children (IROC)
• Global Renal Exercise Network

Kelly Helm

Vice President of Patient Engagement at EveryLife Foundation for Rare Diseases

Kelly Helm is a kidney disease patient advocacy leader and caregiver to her young adult daughter who was diagnosed with Focal Segmental Glomerulosclerosis (FSGS) in 2009 at the age of 3. Searching for support herself, Kelly began forming kidney disease patient communities as a volunteer and then joined the staff of NephCure in 2011 where she spent more than a decade building impactful connections with rare kidney disease patient families and building patient support and educational programs. Her daughter Macy, has now been living with FSGS for more than 15 years, has experienced ESKD twice and has received two living kidney donor transplants from two amazing family friends. Kelly has built robust voice of patient programs ensuring that the patient perspective is included in the drug development process, including co-coordinating several Externally Led Patient Focused Drug Development meetings. She has published articles from the caregiver perspective in the Clinical Journal of the American Society of Nephrology about young adults transitioning to adult care and living kidney donation. In her current role as VP of Patient and Community Engagement at the EveryLife Foundation for Rare Diseases she coalesces rare disease patient advocacy groups and rare disease patients to advocate for impactful policy initiatives such as protecting funding and stability for our nation's biomedical research and public health agencies.

Ronald D. Perrone, MD, FASN

Professor of Medicine and Distinguished Faculty at Tufts Medical Center and Tufts University School of Medicine

Dr. Perrone is Professor of Medicine and Distinguished Faculty at Tufts Medical Center and Tufts University School of Medicine. He has had a wide-ranging interest in ADPKD, including basic investigations addressing mechanisms of ion transport by cystic epithelia, clinical investigations describing causes of mortality in the ADPKD ESKD population, and participation and direction of clinical trials in ADPKD. He has participated in all of the US interventional clinical trials in ADPKD serving as the Boston site Principal Investigator and member of the Steering Committees 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 STAGED-PKD study. He also served as site PI for the Tesevatinib (Kadmon) and Bardoxolone (Falcon) studies. He initiated and co-led the PKD Outcomes Consortium and has been the principal individual involved in bringing together the contributors from academia, pharma, NIH, FDA, EMA, CDISC, and C-Path. Total kidney volume was approved as a prognostic biomarker by both the FDA and the EMA as a result of these efforts. Dr. Perrone serves as co-Director of the PKD Outcomes Consortium, the goal of which is to develop new approaches to achieving regulatory goals for ADPKD and ARPKD. Dr. Perrone served as a member of the workgroup for the ADPKD KDIGO Guideline which has just been published in the February issue of Kidney International.

Anne Rohall-Andrade, JD

Director of Public Policy at the American Kidney Fund

Anne Rohall-Andrade, JD is a healthcare and disability attorney who has represented patients in a variety of roles in the public and private sectors. After earning her law degree, Anne served as a law clerk at the U.S. Court of Federal Claims, where she specialized in healthcare-related cases. After working in private practice and lobbying for healthcare policy on Capitol Hill for several nonprofits, Anne joined the U.S. Department of Health and Human Services (HHS) as an attorney advisor in the HHS Office of the Inspector General, and as a Senior Counselor to Secretary Alex Azar, playing a key role in the design and implementation of the Advancing American Kidney Health Executive Order and serving as the HHS liaison to the American Society of Nephrology's KidneyX initiative.

Following federal service, Anne served as the Director of Federal Policy and Engagement at Mayo Clinic. She is currently the Director of Public Policy at the American Kidney Fund, where she continues to advocate for patients with kidney disease and engage policymakers to advance equitable and innovative kidney care. Anne is also a member of the American Society of Nephrology's Kidney Health Initiative, Patient and Family Partnership Council. As a living kidney donor to her teenage daughter, Anne brings unique personal and professional expertise to her public policy work.

Tameka Sanders

Senior Associate Director in Patient Advocacy and Professional Relations Boehringer Ingelheim

Tameka is currently a senior associate director in patient advocacy and professional relations supporting the C-R-M team at Boehringer Ingelheim. In her role she is responsible for providing strategic guidance and strengthening external partnerships with patient organizations and professional societies, integrating patient insights across the lifecycle, and fostering Boehringer's patient centric culture. Tameka's passion for people and the inclusivity of all patient voices is one of the greatest motivators and her "why" for coming to work every day. Her dedication and commitment to patients allowed her to be the recipient of the Global Excellence Award in 2023 at Boehringer.

Prior to her role in PAR Tameka spent 14 years in sales, 8 years with Novartis and 6 years with Boehringer. In her 14 years of sales, she launched many products and won numerous sales awards, including Presidents Club, Sales Excellence Awards, 100% Club Winner, and MVP. It always warmed Tameka's heart when an HCP would tell her a success story of a patient that they placed on a medication she was "carrying in her bag" at the time. It was the motivator that kept her in the sales for more than a decade. Tameka began her career in research and development at MedImmune Inc. in their protein engineering department. Her passion for people in underserved communities led her to accept a role at Digene Corporation where she was part of a team of scientist that developed an HPV test for women in developing countries. It was such surreal moment early in her career realizing that many of the opportunities and resources that we take for granted in the western world are a rare commodity in other nations. This fueled her passion for people not just in developing countries but right here in her own community and she has continued to be an advocate for people in her community where she lives, where she attends church, and within the school system. When Tameka is not working you can find her in the stands at youth football games, soccer games, track meets, and girl scout meetings. Her biggest motivator in life are her 3 children, Jaylyn (21) a 2024 graduate of The Ohio State, Gabriel (14), and Logan (11). Tameka resides in Upper Marlboro with her younger children and their dog Chloe.

Jennifer A. Schaub, MD

University of Michigan

Dr. Schaub is a faculty member within the Division of Nephrology at the University of Michigan. She obtained a Bachelor's degree in Biometry and Statistics from Cornell University. After graduating from Albert Einstein College of Medicine in the Bronx, she completed her Internal Medicine residency at Montefiore Medical Center. Dr. Schaub then pursued a combined clinical and research fellowship in Nephrology at Yale University. Her research focuses on using computational and systems biology approaches to better understand Chronic Kidney Disease and Acute Kidney Injury.

Curtis Warfield, MS

KHI Patient and Family Partnership Chair

Curtis Warfield is a Senior Quality Analyst with the State of Indiana. In 2012, Mr. Warfield was diagnosed with stage 3 chronic kidney disease due to FSGS. His kidneys rapidly declined, and he started peritoneal dialysis in 2014. His daughter tested to be a living donor. Unfortunately, she was not the best suitable match. His daughter's college sorority sister had followed their story and decided to be tested and was a perfect match. In January 2016, Mr. Warfield received her kidney and a new lease on life. Since his transplant Curtis likes to give forward the gift that was given to him. He is very passionate about advocating and educating the community by bringing awareness to kidney disease and organ donation. Curtis is a member of the Kidney Health Initiative's Patient & Family Partnership Council of the Kidney Health Initiative (KHI-PFPC). He is a peer mentor and volunteers to speak with legislators both on Capitol Hill and in the Indiana State Legislature about kidney disease and organ donation and transplantation. Curtis's concern is in addressing health disparities in the kidney community, where he is co-chair of the NKF Patient Diversity Workgroup, a patient stakeholder on several other health equity advisory committees including the NKF-ASN- Task Force on Reassessing the Inclusion of Race in Diagnosing Kidney Disease. He represents the patients' voice on several national and local patient advisory boards and technical expert panels. Curtis was appointed to the National Faculty Member to the End Stage Renal Disease Treatment Choices Learning Collaborative (ETCLC), the Indiana Donor Network's Volunteer Advocate Council and the Advancing Kidney Health through Optimal Medication Management (AKHOMM). Curtis reviews documents and grant summaries for Patient-Centered Outcomes Research Translation Center (PCOR-TC). He is a patient representative with Kidney Precision Medicine Project (KPMP) and an At-Large member of the OPTN Kidney Transplantation Committee. He is a patient advocate/ambassador with several kidney patient organizations.

Curtis is a member of the Board of Directors of the National Kidney Foundation of Indiana and Home Dialyzors United (HDU). Mr. Warfield is the recipient of the 2021 NKF Celeste Castillo Lee Patient Engagement Award, NKF's highest honor to a distinguished kidney patient volunteer. He was awarded the patient volunteer award in 2019 by the National Kidney Foundation of Indiana. He is a sought after speaker for national conferences, health fairs, kidney awareness and organ donation events. He writes articles, blogs and conducts social media events, and interviews about his kidney journey, kidney disease and organ donation. He has a Bachelor of Science degree from Central Michigan University and a Master of Science in Management from Oakland City University. He is an active member of his church and a community volunteer in the Indianapolis area. Mr. Warfield has been married for 37 years, has four adult children, and one grandchild.

Poornima Dilhani Ekanayake Weerasinghe Mudiyanselage, PhD

Washington University in St. Louis

Dr. Poornima D. E. Weerasinghe Mudiyanselage is a Postdoctoral Researcher at Washington University in St. Louis, USA, specializing in Neuroscience, with a focus on interorgan crosstalk and the molecular mechanisms linking acute kidney injury to brain consequences. Under the mentorship of Dr. Andreas Herrlich, her research investigates the role of kidney-released circulating osteopontin in mediating remote neuroinflammation and neurocognitive dysfunction during acute and chronic kidney disease and aims to unravel the complex dynamics and mechanisms underlying this interorgan communication. She obtained her university education in Veterinary Medicine from University of Peradeniya, Sri Lanka and a Ph.D. in Neuroscience from Chonnam National University, South Korea. During her PhD she unraveled the behavioral and neuroplasticity changes in the hippocampus during neurodegenerative disease. With expertise in behavioral neuroscience, molecular neurobiology, neuroimmunology, and bioinformatics, she has authored over 20 publications including eight first author publications in peer-reviewed international journals. She was awarded the Ben J. Lipps Research Fellowship, 2024.