SEPTEMBER 13-17, 2021

Welcome to Kidney Action Week 2021 from American Kidney Fund President & CEO, LaVarne Burton

10:00 AM EDT

LaVarne Burton

President and CEO, American Kidney Fund

LaVarne Addison Burton is President and Chief Executive Officer of the American Kidney Fund (AKF), a national nonprofit organization whose mission is to fight kidney disease and help people live healthier lives. Ms. Burton has led AKF since 2005. AKF works on behalf of the 37 million Americans living with kidney disease, and the millions more at risk, with an unmatched scope of programs that support people wherever they are in their fight against kidney disease—from prevention through transplant. With programs that address early detection, disease management, financial assistance, clinical research, innovation and advocacy, no kidney organization impacts more lives than AKF.

In 2020, more than 94,000 low-income dialysis and transplant patients nationwide were able to pay for insurance premiums, emergency pandemic-related costs and other health care-related costs not covered by insurance, thanks to financial assistance grants from AKF. Millions of people benefit annually from AKF’s efforts to fight kidney disease through Know Your Kidneys™, a nationwide health education and prevention outreach program. For more than 30 years, AKF’s Clinical Scientist in Nephrology Program has contributed to the pipeline of the most promising clinical researchers who have become leaders in the field of nephrology. AKF advocates on behalf of people with kidney disease and provides a platform to help ensure that patients are enabled to tell their own stories and have their voices heard. Through its peer-to-peer KidneyNation platform, AKF engages patients, their loved ones and caregivers in funding the fight against kidney disease.

AKF has significantly enhanced its programs and services during Ms. Burton’s tenure, and her leadership has propelled the organization to many notable milestones. AKF has been a pioneer in the development and operation of patient assistance programs by providing grants to cover health insurance premium costs for low-income patients. To run this program, AKF applied for and received the very first Advisory Opinion under a statute that allows the Inspector General at the US Department of Health and Human Services to establish conditions under which not-for-profit organizations may partner with private sector providers in the health industry to cover patient health insurance premiums. AKF has successfully run the program while navigating a complex maze of legal, regulatory, financing, corporate and public relations challenges. During this time, AKF has more than quadrupled revenues; established the largest nationwide kidney disease prevention and education program; partnered with corporations to develop award-winning public awareness campaigns; increased patient financial assistance to ensure access to care; established a nationwide AKF Advocacy Network that has grown to more than 15,000 Ambassadors; and launched the renal community’s only national annual gala, The Hope Affair, which honors patients, advocates and caregivers. AKF is included in the Consumer Reports list of “Best Charities for Your Donations” and has received Charity Navigator’s highest, 4-star rating for the 19th consecutive year—one of only three charities nationwide to achieve that distinction. Charity Navigator’s rating system evaluates nonprofits for their financial health, accountability and transparency.

Ms. Burton also established the AKF Quality of Work Environment Initiative (QWE), an ongoing effort to involve employees in defining workplace values and practices, carrying them out and evaluating progress. QWE has resulted in staff workplace evaluations that have improved every year of Ms. Burton’s tenure and attrition rates that are far better than industry standards. In 2021, AKF was selected as one of the top 50 nonprofit employers in the United States and is listed on The NonProfit Times prestigious “2021 Best Nonprofits to Work For.”

Before joining AKF, Ms. Burton was a senior partner at Martin & Associates, a consulting firm to the health care industry and to major health information management and technology companies. Previously, she served as President of the Pharmaceutical Care Management Association (PCMA), the national trade association representing pharmacy benefit managers and their partners. During her tenure, Ms. Burton worked with congressional committees to develop Medicare Part D, the prescription drug benefit modeled after the pharmacy benefit management (PBM) pioneered by PCMA member companies.

Ms. Burton served as Executive Secretary to the U.S. Department of Health and Human Services where she managed policy development and regulations and was advisor to the Secretary of the federal government’s largest domestic agency. Prior to that, she served as Deputy Assistant Secretary for Budget Policy at HHS and as Senior Analyst to the Budget Committee of the U.S. House of Representatives, advising the Committee on funding policy and legislative positions for Social Security, Medicare, Medicaid and other health programs.

Ms. Burton is Chair-Elect of the National Health Council (NHC) Board of Directors. The NHC is the only organization of its kind that brings together all segments of the health community to provide a united voice for the more than 133 million people with chronic diseases and disabilities and their family caregivers.

She serves or has served on a number of other boards and coalitions, including Kidney Care Partners and the Advisory Council for the National Institute of Diabetes and Digestive and Kidney Diseases at the National Institutes of Health (NIH) as well as the NIH Council of Councils. She was a Founder and Board Member of Women in the Health Care Industry Foundation and was named by The Wall Street Journal to be among a select group of 100 women chosen nationwide to The Journal’s Executive Taskforce on Women in the Economy. She was a member of the Advisory Board for DefenseWeb, a health care information technology company and subsidiary of Humana.

Ms. Burton was born in Augusta, Georgia and attended public schools there. She received her Bachelor of Arts degree from Howard University and Master of Arts from George Washington University, both in Washington, D.C.

Monday, September 13, 2021

Finding Answers for the Unknown Causes of Kidney Disease: A Roadmap for Change

10:00 AM EDT

Trudy McKanna, MS, CGC

Director of Medical Education, Natera

Trudy McKanna is the Director of Medical Education for Organ Health at Natera. Trudy is an ABGC-certified genetic counselor with over 15 years of clinical experience in prenatal, pediatric, and adult genetics, and 7 years of laboratory and medical education experience. A graduate of the University of Michigan genetic counseling program, she is also a past president of the Michigan Association of Genetic Counselors and a former instructor at the Michigan State University College of Human Medicine.

Dr. Ogo Egbuna, MD, MSc, FASN

Executive Medical Director, Vertex Pharmaceuticals 

Dr. Ogo Egbuna is a transplant nephrologist by training and currently is the therapeutic area head for clinical development in Kidney diseases at Vertex Pharmaceuticals. Dr Egbuna has been involved in drug development in the pharmaceutical industry for over a decade supporting the development of novel therapies in kidney disease and other therapeutic areas. Before, transitioning to industry, Dr. Egbuna was a on faculty at the Beth Israel Deaconess Medical Center and Harvard Medical school seeing patients and conduction NIH funded research in kidney transplantation and the pathophysiology of uremic hyperparathyroidism. He completed medical school at the University of Nigeria, residency at the Mount Sinai-Elmhurst program in internal medicine, clinical fellowship in general nephrology, a fellowship in kidney and pancreas transplant medicine at Beth Israel Deaconess medical center, a research fellowship in endocrinology at the Brigham and Women’s hospital and a fellowship in clinical investigation at the Harvard-MIT school of health science and technology.

Jack Johnson

Executive Director, Fabry Support & Information Group

Jack Johnson is the Co-founder and Executive Director of Fabry Support and Information Group. After receiving requests to form a support group for Fabry patients FSIG was formed in 1996. Through this “kitchen table” support group FSIG strives to provide benefit to others affected by Fabry disease. As a nonprofit organization FSIG helps raise awareness of Fabry disease and its symptoms, its impact on females, and provides a much-needed advocacy link between patients and family members to physicians, researchers, the pharmaceutical industry and regulatory authorities. FSIG offers a wide range of services needed by the Fabry community. Jack has also participated in clinical trials, on a disease registry board and contributed to a number of published papers as well as a book about Fabry disease.

Jack also serves as Vice President, Americas and Global for the Fabry International Network (FIN). FIN is an international volunteer organization comprised of leaders from Fabry support organizations from around the globe.

Dr. Delphine Tuot, MDCM, MAS

Associate Professor, UCSF Division of Nephrology at ZSFG

Dr. Delphine S. Tuot, MDCM, MAS, is an Associate Professor of Medicine in UCSF’s Division of Nephrology at Zuckerberg San Francisco General Hospital and Trauma Center (ZSFG), Associate Chief Medical Officer for Specialty Care at Diagnostics at ZSFG and Director of the UCSF Center for Innovation in Access and Quality. She obtained her undergraduate degree at Stanford University, medical degree from McGill University Faculty of Medicine, and completed residency and fellowship at the University of California San Francisco, where she also obtained a Master’s of Clinical Science with a focus on Implementation and Dissemination Science. Her research projects are focused on the development, implementation and evaluation of interventions that increase patient self-efficacy and self-management of CKD as well as health system innovations that translate evidence into practice for safety-net populations, as they are at greatest risk of CKD-associated morbidity and mortality.

Dr. Manish Maski, MD, MMSc

Global Medical Head, Rare Nephrology, Sanofi Genzyme

Dr. Maski is the Global Medical Head for Rare Nephrology at Sanofi Genzyme, leading and overseeing the global medical strategy and activities related to the Fabry disease, ADPKD, and Alport syndrome programs. Manish joined Sanofi Genzyme in 2016 in the US organization as a Medical Director for Fabry disease, developing strategy and executing numerous US medical affairs activities, including work supporting the FDA full approval of Fabrazyme based on analyses of Real-World Evidence from a global patient registry. From September 2018 to December 2020, he served as the Global Medical Director and medical lead for the ADPKD-venglustat program, working closely with multiple stakeholders to develop strategy and programs supporting the development of a new therapy for ADPKD. Prior to joining Industry, Manish was an attending physician at Beth Israel Deaconess Medical Center (BIDMC) and Harvard Medical School (HMS), where he still maintains a part-time faculty position and performs inpatient nephrology consultations within the BIDMC hospital system. Manish is a board-certified clinical nephrologist and is formally trained in basic, translational, and clinical research at both BIDMC and HMS. Dr. Maski holds a MD from the University of Wisconsin, Madison and a MMSc from Harvard University. He trained in Internal Medicine at Boston University Medical Center before joining BIDMC for his Nephrology Fellowship and post-doctoral research training. Dr. Maski has been on faculty at BIDMC and HMS since 2011.

Michael Spigler, MCHES

VP of Patient Services & Kidney Disease Education, AKF

Mike Spigler has served as Vice President of Patient Services and Kidney Disease Education for the American Kidney Fund (AKF) since July 2015. Mr. Spigler oversees a spectrum of programs and services: prevention activities, top-rated health educational resources, clinical research and direct financial assistance that enables kidney patients to access lifesaving medical care, including dialysis and transplantation.

Mr. Spigler has more than 20 years of experience in creating and managing health education programs for a multitude of chronic health conditions, including kidney disease, cancer, food allergies and anxiety disorders.

Monday, September 13, 2021

Hypertension, Diabetes and Kidney Disease: Understanding the Connection

12:30 PM EDT

Dr. Neha Pagidipati, MD, MPH

Asst. Prof. of Medicine in Cardiology, Duke Clinical Research Institute

Dr. Neha J. Pagidipati, MD, MPH, is an Assistant Professor of Medicine in Cardiology and cardiometabolic disease prevention specialist. Since 2011, she has conducted research on cardiometabolic disease prevention, lifestyle modification and weight management. She is currently an NIH K12 scholar in Implementation and Dissemination Science.

Dr. Pagidipati directs the Duke Cardiometabolic Disease Prevention Program, which focuses on behavior change and risk factor management in patients with high risk of cardiovascular and metabolic diseases. The program’s multi-disciplinary team of cardiologists, endocrinologists, nephrologists, and hepatologists work together to provide coordinated, team-based care to the most high-risk and complex patients in the health system.

Dr. Pagidipati’s research grants include the COORDINATE-Diabetes Trial, a national cluster-randomized implementation study to improve the quality of care for patients with diabetes and cardiovascular disease across the U.S. She served as a study clinician on the EXSCEL (Exenatide Study of Cardiovascular Event Lowering) trial. She is currently conducting a nation-wide study of obesity management using real-world data sources, and is the Return of Results Co-Chair for the Baseline Health Study in collaboration with Verily Life Sciences. In addition, she is leading a large study within the Duke Health System to study heterogeneity within cardiovascular disease risk and response to weight loss interventions among individuals with obesity.

Dr. Pagidipati graduated from Harvard College and Harvard Medical School. She completed her internal medicine residency at Brigham and Women’s Hospital. During a two-year research fellowship in Global Women’s Health at the Brigham, she obtained an MPH from the Harvard School of Public Health and studied cardiovascular disease prevention in women in India. Dr. Pagidipati completed a four-year cardiology fellowship at the Duke University School of Medicine and served as Chief Research Fellow at the Duke Clinical Research Institute. In 2017, she became a faculty member of the Duke University School of Medicine School.

Dr. Samuel Dagogo-Jack, MD, DSc

Dir., Division of Endocrinology, Diabetes & Metabolism, UT Health Science Ctr

Dr. Sam Dagogo-Jack, MD, DSc, is the A. C. Mullins Endowed Professor and Chief of the Division of Endocrinology, Diabetes and Metabolism at the University of Tennessee Health Science Center (UTHSC), Memphis, Tennessee. Dr. Dagogo-Jack’s current research interests include the interaction of genetic and environmental factors in the prediction and prevention of prediabetes, diabetes, and its complications. He is Principal Investigator of multiple NIH-funded studies, including the Diabetes Control and Complications Trial/ Epidemiology of Diabetes Interventions and Complications (DCCT/EDIC); the Diabetes Prevention Program (DPP)/DPP Outcomes Study (DPPOS); and the Pathobiology of Prediabetes in a Biracial Cohort Study (POP-ABC)/ Pathobiology and Reversibility of Prediabetes in a Biracial Cohort Study (PROP-ABC). Dr. Dagogo-Jack’s publications include 6 books, 31 book chapters and more than 500 scientific papers in peer-reviewed journals. He is a Past President of the American Diabetes Association and a recipient of the Banting Medal for Leadership from the ADA, the Distinction in Endocrinology Award from the American College of Endocrinology, and the President’s Discover Award for research productivity from the University of Tennessee. Dr. Dagogo-Jack graduated from the University of Ibadan College of Medicine, Nigeria; completed Internal Medicine residency and bench research training at the Royal Victoria Infirmary and Wellcome Research Labs, University of Newcastle, England; and fellowship training in Endocrinology, Diabetes and Metabolism at Washington University School of Medicine in St Louis.

Dr. Pablo Garcia, MD, MS

Nephrologist

Dr. Pablo Garcia is a Guatemalan physician and nephrologist, graduate from Universidad de San Carlos in Guatemala. Trained in internal medicine in New Brunswick, New Jersey. Dr. Garcia was an American Kidney Fund Clinical Scientist in Nephrology fellow while he was doing his general nephrology and Masters in Research and Epidemiology at Stanford University. Currently he is training in transplant nephrology at Stanford University.

Dr. Garcia has a special interest in global health nephrology, covid-19 in patients on dialysis, chronic kidney disease of unknown etiology, onconephrology, and tubulointerstitial kidney diseases. He is also interested in understanding and studying chronic kidney diseases in settings where patients have limited access to medical care.

Melanie Paris, M.A., MPH

Senior Director of Health Initiatives and Education, AKF

Melanie Paris, M.A., MPH, is Senior Director of Health Initiatives and Education at the American Kidney Fund (AKF), located in Rockville, Maryland. Her focus at AKF is creating awareness of kidney disease, its common causes, and effective prevention among at-risk populations throughout the United States. She leads the creation and development of programs and resources for people living with kidney disease, caregivers and healthcare providers.

Melanie joined AKF in 2017 with several years of experience in health program implementation, evaluation and analyses with such companies such as Truven Health Analytics, The Ohio State University Wexner Medical Center and the American Heart Association. Melanie is both professionally and personally committed to working as an agent of change to improve public health by encouraging the implementation of interventions that are innovative – yet simple, practical and culturally relevant.

Melanie holds a Bachelor’s degree in Foreign Language Education and Master’s degrees in both African Studies and Public Health, all from The Ohio State University.

Melanie is the mother of two teenagers and resides in Silver Spring, Maryland.

Monday, September 13, 2021

The Importance of Clinical Trials: Why Participant Diversity Makes a Difference

3:00 PM EDT

Dr. Patrick O. Gee, Sr., Ph.D., JLC

Founder & CEHD, iAdvocate, Inc.

Dr. Patrick Gee graduated from the American University School of Public Affairs in 2012 with a Doctor of Philosophy in Justice, Law, & Criminology. In April 2013, Dr. Gee was diagnosed with Stage 3b End-Stage Kidney Disease (ESKD). He is a former Peritoneal/Hemodialysis patient due to suffering from Diabetic Kidney Disease. On April 21, 2017, Dr. Gee received a kidney transplant and, after several complications, his new kidney began functioning on the 47th day post-transplant.

Dr. Gee is a retired Major/Chief of Security from the Virginia Department of Corrections; and currently serves as the Founder & CEHD of iAdvocate, Inc., a non-profit Faith-based Health & Wellness organization. He is also an Ordained Minister at Mountain Movers Ministry in Richmond, VA. As a Patient Representative for the Diabetes Kidney Disease-Collaborative Task Force and an advocate for those living with chronic kidney disease and the morbid conditions that contribute to this disease, such as diabetes, cardiovascular disease, hypertension, and obesity, Dr. Gee uses his personal experiences to teach, coach, mentor, and educate others on how best to manage their outcomes. He also ensures that underserved, undervalued, and disenfranchised communities of color have a voice in their quality of life and equitable healthcare access.

Dr. Gee’s mantra is, “I am the Voice for the Voiceless and the Face for the Faceless in the fight against kidney disease.”

Dr. Kirk Campbell, MD

Professor, Icahn School of Medicine at Mount Sinai

Dr. Kirk Campbell is Professor of Medicine, Vice Chair for Diversity, Equity and Inclusion and Director of the Nephrology Fellowship Program at the Icahn School of Medicine at Mount Sinai. In addition to treating patients with kidney disease, Dr. Campbell leads an NIH-funded research program focused on developing new therapeutic interventions. He actively participates in clinical trials testing novel agents for primary glomerular disease. He is a Past-President of the New York Society of Nephrology, a member of the Board of Directors of the Nephcure Foundation, and a member of the Medical Advisory Board of the National Kidney Foundation Serving Greater New York.

Melanie Paris, M.A., MPH

Senior Director of Health Initiatives and Education, AKF

Melanie Paris, M.A., MPH, is Senior Director of Health Initiatives and Education at the American Kidney Fund (AKF), located in Rockville, Maryland. Her focus at AKF is creating awareness of kidney disease, its common causes, and effective prevention among at-risk populations throughout the United States. She leads the creation and development of programs and resources for people living with kidney disease, caregivers and healthcare providers.

Melanie joined AKF in 2017 with several years of experience in health program implementation, evaluation and analyses with such companies such as Truven Health Analytics, The Ohio State University Wexner Medical Center and the American Heart Association. Melanie is both professionally and personally committed to working as an agent of change to improve public health by encouraging the implementation of interventions that are innovative – yet simple, practical and culturally relevant.

Melanie holds a Bachelor’s degree in Foreign Language Education and Master’s degrees in both African Studies and Public Health, all from The Ohio State University.

Melanie is the mother of two teenagers and resides in Silver Spring, Maryland.

Home Dialysis and the Patient Experience: Could Home Dialysis be for You?

10:00 AM EDT

Dr. Rachel Perlman, MD, FACP

Clinical Associate Professor, Specialty in Nephrology and Internal Medicine at University of Michigan Health

Dr. Perlman attended Bryn Mawr College and then received her medical degree from University of Chicago Pritzker School of Medicine. She did her Internal Medicine Residency and Nephrology Fellowship at the University of Michigan—where she currently works. As a nephrologist, Dr. Perlman enjoys taking care of dialysis patients, especially people on home dialysis. In addition to her clinical work in nephrology, she is very committed to medical education. Dr. Perlman teaches at the University of Michigan Medical School and serves as Associate Program Director for the Internal Medicine Residency Program. She has published articles on dialysis and anemia as they relate to chronic kidney disease.

Leigh-Ann Williams, MPH, MS

AKF Ambassador & Research fellow, Dillard University

Leigh-Ann is a lifelong resident of the greater New Orleans area. Her educational background includes a B.S. in toxicology from Univ. of Louisiana Monroe, a M.S. in toxicology from the Univ. of Florida, and a Master of Public Health from LSU Health Sciences Center New. She is the program coordinator for the federal 340B drug pricing program at West Jefferson Medical Center and is a Post Masters research fellow at Dillard University. She is a patient ambassador for the American Association of Kidney Patients (AAKP). She is also a certified Kidney Health Coach and an ambassador with the American Kidney Fund. Leigh-Ann is a 2021-2023 board member for the Kidney Health Initiative’s Patient and Family Partnership Council (PFPC). Leigh-Ann’s hope as an Ambassador is to continue the work she has been doing with her foundation, The LeighWilli Foundation, to Advocate, Educate, Encourage, and Empower people with kidney disease. Leigh-Ann is an avid public speaker and motivator and is involved in several social, civic, and service organizations. In her limited spare time, Leigh-Ann loves to travel, go to the movies, spend time with family, and meet new people.

Nieltje Gedney

Executive Director, Home Dialyzors United

Nieltje is the current Executive Director of Home Dialyzors United (HDU), having been past Treasurer and Vice President of HDU for over 5 years. She comes to HDU as an 8 year solo home hemodialyzor, and 20 years of pro-actively managing CKD due to AKI. Active in the Policy and Advocacy Committee, she has spoken at numerous events including the Alliance for Home Dialysis, American Kidney Fund, National Kidney Foundation, SONG, Annual Dialysis Conference, The Kidney Project and Kidney Health Initiative (KHI), ANNA and Kidney Week. She is a contributor at Kidney Views Blog, CJASN, and Seminars in Nephrology as well.

Nieltje’s patient advocacy stems from experience on Capitol Hill beginning at 16, where she learned that power in numbers can bring about change.

Dr. Graham Abra, MD

Executive Director, Home Dialyzors United

Dr. Graham Abra is a Clinical Assistant Professor at Stanford University and the Vice President, Medical Affairs and Home Therapy at Satellite Healthcare, a non-profit dialysis provider. He served as the Medical Director of WellBound San Jose, a home dialysis center for 5 years. His clinical practice focuses on the care of patients with advanced chronic kidney disease with an emphasis on home therapies. At Satellite Healthcare he helps to oversee physician leadership, home dialysis quality programs, and the care of over 1600 home dialysis patients.

Tuesday, September 14, 2021

Know Your Kidney Health Care Team: Effective Communication for the Best Health Outcome

12:30 PM EDT

Dr. Julie Wright Nunes, MD, MPH

Associate Professor of Medicine, University of Michigan Health System

Dr. Wright Nunes is a nephrologist and researcher at the University of Michigan in Ann Arbor, Michigan. She is the AKF Chair of the Medical Advisory Committee and on the board of the American Kidney Fund, she is Chair of the Clinical Scientist in Nephrology program and Vice Chair of AKF Kidney Patient Education and outreach committee. Her research focuses on health literacy and optimizing patient education and support across the continuum of CKD care. This is particularly relevant not only clinically but for the AKF mission of fighting kidney disease on all fronts. Her work strives to improve the health of patients living with CKD and creating primary and secondary interventions to slow or stop complications and risk associated with CKD. She also has developed a more recent research platform educating youth about kidney disease within science curriculums and increasing student health literacy.

Kathy Wong, RDN

Registered Dietitian Nutritionist

Kathy received her Bachelor of Science in Clinical Nutrition from University of California, Davis, and completed her dietetic internship through the San Diego WIC Dietetic Internship Program. Her career as a registered dietitian began as a WIC dietitian in 2014. Later, she transitioned to the clinical setting, and for the past 4 years she has been a renal dietitian working with adults on in-center hemodialysis. She also provides education to CKD patients prior to starting dialysis regarding kidney disease, how to optimize their health by collaborating with their healthcare team, and treatment modalities available. Her passion in helping her patients navigate their diet and how to work with their healthcare team began with her personal journey with Crohn’s.

Kerry Leach, MHA, BSN, RN

Regional Opperations Manager, Davita

Ms. Leach has over 20-years of experience as a healthcare nursing professional. Ms. Leach has her Masters in Healthcare Administration from Webster University, a Bachelor of Science in Nursing from McKendree University, and an Associates Degree in Applied Science Nursing from Kentucky State University. She also carries a Certification as a Personal Life Coach.

Her work has ranged from working in cardiothoracic care in her early years, to working in the great discipline of dialysis as a Nephrology Nurse. Her focus once in the renal community remained in the growth of projects to better partner with local stakeholders to improve understanding of the dialysis patient construct. As a Regional Director of Operations with DaVita Kidney Care, while working alongside dynamic staff partners, she has worked on quality clinical care and bussiness operations. Ms. Leech practices a servant leadership philosophy, which aids her greatest passion of creating structured workforce plans through strong team member relationships.

A San Francisco native, Ms. Leach has carried her diverse upbringing into raising three amazing men. Along with her husband of 27 years, she has kept busy watching and enjoying them grow as they have explored and spread across two states and two continents. Ms. Leach is excited to also be the grandmother of an amazing baby boy who was born in December of 2020. She also enjoys being a personal chef, yoga, Pilates and wine pairing.

“Life’s most persistent and important question is what are you doing for others” – Martin Luther King Jr.

Nichole Jefferson

Patient and American Kidney Fund Ambassador

Nichole Jefferson, who currently resides in Dallas, TX, was diagnosed with end-stage renal disease in 2003 and experienced both forms of dialysis (HD and PD). On June 12, 2008, she received the gift of life, a kidney transplant. Due to a series of medical challenges she faced following her transplant, Nichole realized that a transplant was simply another form of treatment and not a cure. This realization initiated her enthusiasm for advocacy. Nichole shares her story with her community and underserved populations and speaks with legislators regarding the need for early detection and other issues relating to chronic kidney disease. She became a Field Ambassador for the American Association of Kidney Patients in 2017, joined the Home Dialyzors United (HDU) Board of Directors in 2017 and was recently elected President of the Board. In addition, she serves on the Kidney Precision Medicine Project Community Engagement Committee and is the co-leader of the NIDDK APOLLO Community Advisory Board.

Shauna Phillips, LCSW

Co-Chair Illinois Council of Nephrology Social Workers

After graduating from Jane Addams College of Social Work with a master’s degree, I worked with several social service agencies before I found my niche working in dialysis. I spent about a year and a half working for a small local dialysis provider in Chicago, then transitioned to working in a busy Chicago hospital to gain more extensive medical experience. While I enjoyed the fast pace and the variety of people I met working in the emergency room, I really missed building the long-term relationships with patients and staff in the dialysis setting. In the last eighteen years since my return to a clinic, I have mostly worked in the same location while periodically assisting at other facilities. I have supported in-center, peritoneal, and home hemodialysis units. In addition, I currently serve on the Medical Review Board for ESRD Network 10, and as Chair for the Illinois Council of Nephrology Social Workers in conjunction with the National Kidney Foundation of Illinois.

Dr. Jamie Green, MD, MSc

Co-Director, Kidney Health Research Institute, Geisinger Health System

Dr. Jamie Green received her undergraduate degree from Duquesne University and her medical degree from Temple University School of Medicine. She completed her Internal Medicine Residency at the Massachusetts General Hospital and her Nephrology Fellowship at the University of Pittsburgh where she also obtained her Master of Science in Medical Education. Dr. Green came to Geisinger in 2012 and is currently an Associate Professor of Medicine and Clinical Research, Co-Director of the Kidney Health Research Institute, and Medical Director of Quality and Innovation for Medicine Specialties. Her work focuses on optimizing care for patients with kidney disease through patient engagement, self-management support, and navigation assistance. She has received funding from both PCORI and the NIH to study interventions to improve patient preparation for kidney failure treatments.

Tuesday, September 14, 2021

Living with Stage 3 Kidney Disease

3:00 PM EDT

Dr. Yoshio N. Hall, MD, MS

Professor, Division of Nephrology, University of Washington

Dr. Yoshio Hall is Professor of Medicine at the University of Washington. He directs the Kidney Clinic at Harborview Medical Center, King County’s public hospital where he provides care to patients with advanced chronic kidney diseases. He is a former American Kidney Fund Board member and recipient of AKF’s Clinical Scientist in Nephrology award. As a Core Investigator and epidemiologist at the Kidney Research Institute, he has studied the healthcare structure, utilization and outcomes of patients with chronic kidney diseases from traditionally underserved populations

Amanda Lane, MS, RD, LDN

Renal Registered Dietitian, University of Florida Health

Amanda Lane is a Renal Registered Dietitian with a bachelor’s degree in Dietetics from Kansas State University and a master’s degree in Food Science and Human Nutrition from the University of Illinois at Urbana-Champaign. Amanda currently works with adult and pediatric patients receiving peritoneal dialysis and in-center hemodialysis in Gainesville, FL. She has developed a passion for helping patients with low health literacy and low socioeconomic status understand how to navigate a modern renal diet. Amanda values the links between food, culture and health and enjoys seeing patients thrive while enjoying their preferred foods while living a healthful lifestyle.

Cindy Valette

AKF Ambassador & Kidney Disease Advocate

Cindy Vallette resides in Henderson, NV. She has three daughters and an amazing grandson. Ms. Vallette been in the local Hospitality and Travel industry the majority of her career, and her pastimes include traveling, sports, gardening, jewelry making and promotion of Kidney Awareness.

After several weeks of not feeling well Ms. Vallette scheduled an appointment with her primary care doctor. After a series of blood tests, she suddenly and unexpectedly heard the frightening words, “Your kidneys are failing!”; she was in stage 3 of kidney failure. Shocked, confused, and overwhelmed by the news Ms. Vallette knew she had to align myself with great resources and fight for her kidneys. Ms. Vallette changed every aspect of her daily diet and her kidneys began to stabilize. Through her proactive changes, to this day, Ms. Vallette has been fortunate enough to avoid renal failure.

The diagnosis prompted Ms. Vallette to use this negative experience in a positive way as a person who tries to educate others about kidney disease. She often tells people how kidney disease can happen to anyone, at any time, and that’s why it’s so important to get checked screened for early detection. Through her actions, Ms. Vallette hopes to educate more people and bring awareness to her community about kidney disease. She often says, “you never know whose life you may impact or who you might learn from or educate!”. Ms. Vallette’s mission is to help empower those affected by kidney disease and provide education on how important it is to fight for early detection and management. As a result, she is incredibly excited to continue as an Ambassador with AKF. She hopes to hope to use the opportunity to speak during Kidney Action Week to inspire others and serve as an advocate for fellow “kidney warriors”.

Tamara Ruggiero, M.Ed

VP of Communications & Marketing, AKF

Since 2005, Tamara Ruggiero has developed and led the American Kidney Fund’s marketing and communications team. After growing up with a father on dialysis, she is passionately dedicated to ensuring that AKF’s external communications and marketing campaigns are informed by the authentic patient voice and perspective. Under her leadership, AKF has developed an authoritative, top-tier kidney website with nearly 18 million annual page views; launched a nationwide patient Advocacy Network that today numbers more than 16,000 members; created an engaging, supportive social media platform that reaches 1.5 million people monthly; instituted creative new programs such as the Living Donor Protection Report Card; and created a media relations program generating more than 2 billion annual media impressions. Ms. Ruggiero is honored to lead a talented and dedicated team who have partnered with colleagues across the organization to produce campaigns and materials that received 26 national awards in 2020.

A journalist by training, Ms. Ruggiero held a range of communications and marketing positions before joining AKF, working for a large DC-area hospital system, a national human resources association, major textbook publishers, and a daily newspaper where she was a reporter and editor. She holds a bachelor’s degree in journalism from Boston University and a master’s degree in education from Mount Saint Mary’s University.

Ask a Nephrologist: Audience Q&A with Dr. Akhtar Ashfaq

10:00 AM EDT

Dr. Akhtar Ashfaq, MD

Internist and Nephrologist

Dr. Ashfaq is an Internist and Nephrologist by training and is board certified in both internal medicine and nephrology. Dr. Ashfaq did his internal medicine internship and residency at Good Samaritan Hospital, University of Cincinnati in Cincinnati, Ohio, where he was also a Chief Resident. He then joined North Shore University Hospital, Cornell University School of Medicine for fellowship in Nephrology. In 1997, Dr. Ashfaq was appointed on the faculty of North Shore University Hospital and then on the faculty of NS-LIJ Health System, Albert Einstein College of Medicine. During this time he served as Associate Program Director of Nephrology fellowship program, Director of Inpatient Services and Director of Clinical trials. In 2005, Dr. Ashfaq was appointed as Associate Chief Division of Nephrology and he stayed on this position until April of 2009.

During the time in Academia, he also served on the faculty of Cornell University Medical College and NYU School of Medicine and Hofstra University School of Medicine, a position he still holds. . In 2015, Dr. Ashfaq moved to Astra Zeneca to start the CKD group in Global Medical Affairs. In that capacity, he laid the foundation of CKD franchise and was instrumental in preparing Astra Zeneca for the global launches of two potential blockbuster molecules in the areas of Anemia and Hyperkalemia. Dr. Ashfaq has published in Major Nephrology Journals, has contributed to Internal Medicine and Nephrology text books; he has been a reviewer for most of the Nephrology journals and also served as a reviewer of NephSAP. He has also been on the editorial board of Journal of Nephrology. Dr. Ashfaq has been on the board of trustees of American Kidney fund and is also an active member of the Medical Advisory Board of American Association of Kidney Patients.

Michael Spigler, MCHES

VP of Patient Services & Kidney Disease Education, AKF

Mike Spigler has served as Vice President of Patient Services and Kidney Disease Education for the American Kidney Fund (AKF) since July 2015. Mr. Spigler oversees a spectrum of programs and services: prevention activities, top-rated health educational resources, clinical research and direct financial assistance that enables kidney patients to access lifesaving medical care, including dialysis and transplantation.

Mr. Spigler has more than 20 years of experience in creating and managing health education programs for a multitude of chronic health conditions, including kidney disease, cancer, food allergies and anxiety disorders.

Wednesday, September 15, 2021

Congressional Briefing: Increasing Kidney Transplants in Communities of Color

1:00 PM EDT

LaVarne Burton

President and CEO, American Kidney Fund

LaVarne Addison Burton is President and Chief Executive Officer of the American Kidney Fund (AKF), a national nonprofit organization whose mission is to fight kidney disease and help people live healthier lives. Ms. Burton has led AKF since 2005. AKF works on behalf of the 37 million Americans living with kidney disease, and the millions more at risk, with an unmatched scope of programs that support people wherever they are in their fight against kidney disease—from prevention through transplant. With programs that address early detection, disease management, financial assistance, clinical research, innovation and advocacy, no kidney organization impacts more lives than AKF.

In 2020, more than 94,000 low-income dialysis and transplant patients nationwide were able to pay for insurance premiums, emergency pandemic-related costs and other health care-related costs not covered by insurance, thanks to financial assistance grants from AKF. Millions of people benefit annually from AKF’s efforts to fight kidney disease through Know Your Kidneys™, a nationwide health education and prevention outreach program. For more than 30 years, AKF’s Clinical Scientist in Nephrology Program has contributed to the pipeline of the most promising clinical researchers who have become leaders in the field of nephrology. AKF advocates on behalf of people with kidney disease and provides a platform to help ensure that patients are enabled to tell their own stories and have their voices heard. Through its peer-to-peer KidneyNation platform, AKF engages patients, their loved ones and caregivers in funding the fight against kidney disease.

AKF has significantly enhanced its programs and services during Ms. Burton’s tenure, and her leadership has propelled the organization to many notable milestones. AKF has been a pioneer in the development and operation of patient assistance programs by providing grants to cover health insurance premium costs for low-income patients. To run this program, AKF applied for and received the very first Advisory Opinion under a statute that allows the Inspector General at the US Department of Health and Human Services to establish conditions under which not-for-profit organizations may partner with private sector providers in the health industry to cover patient health insurance premiums. AKF has successfully run the program while navigating a complex maze of legal, regulatory, financing, corporate and public relations challenges. During this time, AKF has more than quadrupled revenues; established the largest nationwide kidney disease prevention and education program; partnered with corporations to develop award-winning public awareness campaigns; increased patient financial assistance to ensure access to care; established a nationwide AKF Advocacy Network that has grown to more than 15,000 Ambassadors; and launched the renal community’s only national annual gala, The Hope Affair, which honors patients, advocates and caregivers. AKF is included in the Consumer Reports list of “Best Charities for Your Donations” and has received Charity Navigator’s highest, 4-star rating for the 19th consecutive year—one of only three charities nationwide to achieve that distinction. Charity Navigator’s rating system evaluates nonprofits for their financial health, accountability and transparency.

Ms. Burton also established the AKF Quality of Work Environment Initiative (QWE), an ongoing effort to involve employees in defining workplace values and practices, carrying them out and evaluating progress. QWE has resulted in staff workplace evaluations that have improved every year of Ms. Burton’s tenure and attrition rates that are far better than industry standards. In 2021, AKF was selected as one of the top 50 nonprofit employers in the United States and is listed on The NonProfit Times prestigious “2021 Best Nonprofits to Work For.”

Before joining AKF, Ms. Burton was a senior partner at Martin & Associates, a consulting firm to the health care industry and to major health information management and technology companies. Previously, she served as President of the Pharmaceutical Care Management Association (PCMA), the national trade association representing pharmacy benefit managers and their partners. During her tenure, Ms. Burton worked with congressional committees to develop Medicare Part D, the prescription drug benefit modeled after the pharmacy benefit management (PBM) pioneered by PCMA member companies.

Ms. Burton served as Executive Secretary to the U.S. Department of Health and Human Services where she managed policy development and regulations and was advisor to the Secretary of the federal government’s largest domestic agency. Prior to that, she served as Deputy Assistant Secretary for Budget Policy at HHS and as Senior Analyst to the Budget Committee of the U.S. House of Representatives, advising the Committee on funding policy and legislative positions for Social Security, Medicare, Medicaid and other health programs.

Ms. Burton is Chair-Elect of the National Health Council (NHC) Board of Directors. The NHC is the only organization of its kind that brings together all segments of the health community to provide a united voice for the more than 133 million people with chronic diseases and disabilities and their family caregivers.

She serves or has served on a number of other boards and coalitions, including Kidney Care Partners and the Advisory Council for the National Institute of Diabetes and Digestive and Kidney Diseases at the National Institutes of Health (NIH) as well as the NIH Council of Councils. She was a Founder and Board Member of Women in the Health Care Industry Foundation and was named by The Wall Street Journal to be among a select group of 100 women chosen nationwide to The Journal’s Executive Taskforce on Women in the Economy. She was a member of the Advisory Board for DefenseWeb, a health care information technology company and subsidiary of Humana.

Ms. Burton was born in Augusta, Georgia and attended public schools there. She received her Bachelor of Arts degree from Howard University and Master of Arts from George Washington University, both in Washington, D.C.

Congresswoman Lisa Blunt Rochester (D-DE)

Assistant Whip for House Leadership

Congresswoman Lisa Blunt Rochester (D-DE), serves on the House Energy and Commerce Committee and worked closely with AKF on the “CARE for All Kidneys Act.” Congresswoman Blunt Rochester is a leading voice in Congress on economic and future of work-related issues. As former Secretary of Labor and State Personnel Director, Lisa leverages her professional experience to advocate for legislation that boosts start-up business growth, removes barriers for citizens re-entering society, and addresses college affordability and ballooning student debt.

Dr. J. Keith Melancon, MD

Chief of the GW Transplant Institute and professor of surgery at The George Washington University Hospital

Dr. Keith Melancon is a general surgeon at The GW Medical Faculty Associates and a professor of surgery at The George Washington University School of Health & Sciences. Dr. Melancon received his medical degree from Tulane Medical School. He completed his internship and residency at Tulane Medical Center. He then completed a transplant surgery fellowship at the University of Minnesota. Prior to moving to Washington D.C., Dr. Melancon was the director of Kidney and Pancreas Transplantation at Johns Hopkins University Hospital. He most recently was the director of Kidney and Pancreas Transplantation at Georgetown University Hospital, Washington Hospital Center, and Children’s National Medical Center.

Dr. Melancon has garnered national and international recognition for setting the world’s record for simultaneously transplanting the greatest number of kidneys via Paired Kidney Exchanges. Dr. Melancon has published extensively in the area of organ transplantation and increasing transplant access to minority patients.

Dr. Ken Sutha, MD, Ph.D.

Instructor of Pediatric Nephrology, Stanford University

Dr. Sutha is an Instructor in pediatric nephrology at Lucile Packard Children’s Hospital and Stanford University School of Medicine. He performs research on the development of kidney organoids and has been supported by KidneyCure, the American Society of Nephrology Foundation, as 2019 Jared J. Grantham Research Fellow. Additionally, he is also a patient with kidney disease himself. He was diagnosed with focal segmental glomerulosclerosis (FSGS) at the age of 10, and is a two time kidney transplant recipient, having received his first transplant from his father in 2006 and his second transplant from a deceased donor in 2018. For his role as an American Kidney Fund Ambassador and his contributions to the kidney and transplant communities, Dr. Sutha was recognized as AKF’s 2019 Hero of Hope.

Eric Dolby, Sr.

Patient and American Kidney Fund Ambassador

Eric Sebastian Dolby Sr. received a kidney transplant four years ago after spending 11 years on dialysis. His kidney disease was caused by hypertension which sent him into a coma for 13 days. After waking up he was unable to work due to still being sick so he lost his job and became homeless. Eric then received financial assistance from the American Kidney Fund which helped tide him over unless his social security disability application was approved. Eric now lives in Raleigh, N.C. and works for Hilton as a chief engineer and task force engineer.

Nichole Jefferson

Patient and American Kidney Fund Ambassador

Nichole Jefferson was diagnosed with end-stage renal disease in 2003 and experienced both forms of dialysis (HD and PD). On June 12, 2008, she received the gift of life, a kidney transplant. Due to a series of medical challenges following her transplant, Nichole realized that a transplant was simply another form of treatment and not a cure. This realization initiated her enthusiasm for advocacy. Nichole shares her story with her community and underserved populations and speaks with legislators regarding the need for early detection and other issues relating to chronic kidney disease. She became a Field Ambassador for the American Association of Kidney Patients in 2017, joined the Home Dialyzors United (HDU) Board of Directors in 2017 and was recently elected President of the Board. In addition, she serves on the Kidney Precision Medicine Project Community Engagement Committee and is the co-leader of the NIDDK APOLLO Community Advisory Board. Nichole currently resides in Dallas.

Dr. Frances Ashe-Goins, RN, MPH, FAAN, Ph.D. (hon)

Former Deputy Director for HHS Office on Women’s Health

Frances Ashe-Goins is an adjunct professor at the University of South Carolina College of Nursing and Arnold School of Public Health, and a health consultant with expertise in nursing, minority health and public health issues. She is on several boards and concentrates her volunteer activities with national and local organization that address lupus, kidney disease, women’s rights, HIV/AIDS, domestic violence and sexual assault, human trafficking, maternal mortality, minority women’s health, and healthy youth. She is also an active member of AKF’s Advocacy Network and an AKF Boardmember.

Ashe-Goins was the Deputy Director for the U.S. Department of Health and Human Services (HHS) Office on Women’s Health (OWH) until her retirement in 2015. During her tenure she concentrated on lupus, HIV/AIDS, kidney disease and transplantation, breast cancer, young women’s health, family and intimate violence, and human trafficking.

Wednesday, September 15, 2021

Ask a Nephrologist: Audience Q&A featuring the “The Cooking Doc” – Dr. Blake Shusterman

2:30 PM EDT

Dr. Blake Shusterman, MD

Organization Nephrologist & The Cooking Doc, Carolina Nephrology

Dr. Blake Shusterman is a board certified nephrologist and partner at Carolina Nephrology, a twenty-two provider practice in Greenville, SC. He is also the creator and host of The Cooking Doc (www.thecookingdoc.co), and author of the book The Cooking Doc’s Kidney-Healthy Cooking: A Modern 10-Step Guide to Preventing and Managing Kidney Disease.

Dr. Shusterman serves as the medical director at multiple dialysis units that provide in-center dialysis, home hemodialysis, peritoneal dialysis and acute, in-hospital dialysis. He is a Clinical Assistant Professor at the USC School of Medicine in Greenville and oversees the medical student nephrology rotations.

In the past he has served on the Medical Advisory Board for US Renal Care and currently he is a board member of the Carolina Kidney Alliance. He is passionate about home dialysis, patient education, and the importance of diet in the management of chronic kidney disease. His interest in diet and kidney disease led him to his role as an ambassador for the American Kidney Fund’s Kidney Kitchen.

Dr. Shusterman earned his medical degree from The Ohio State University and went on to complete his internal medicine residency and nephrology fellowship at the University of Virginia where he served as chief fellow. He holds a BA in Anthropology from Tufts University.

Melanie Paris, M.A., MPH

Senior Director of Health Initiatives & Education, AKF

Melanie Paris, M.A., MPH, is Senior Director of Health Initiatives and Education at the American Kidney Fund (AKF), located in Rockville, Maryland. Her focus at AKF is creating awareness of kidney disease, its common causes, and effective prevention among at-risk populations throughout the United States. She leads the creation and development of programs and resources for people living with kidney disease, caregivers and healthcare providers.

Melanie joined AKF in 2017 with several years of experience in health program implementation, evaluation and analyses with such companies such as Truven Health Analytics, The Ohio State University Wexner Medical Center and the American Heart Association. Melanie is both professionally and personally committed to working as an agent of change to improve public health by encouraging the implementation of interventions that are innovative – yet simple, practical and culturally relevant.

Melanie holds a Bachelor’s degree in Foreign Language Education and Master’s degrees in both African Studies and Public Health, all from The Ohio State University.

Melanie is the mother of two teenagers and resides in Silver Spring, Maryland.

Gout & Kidney Disease

10:00 AM EDT

Dr. Lawrence Edwards, MD, MACP, MACR

CEO, Gout Education Society

Dr. N. Lawrence Edwards is Professor of Medicine, Division of Rheumatology and Clinical Immunology, as well as Program Director and Vice Chairman of the Department of Medicine at the University of Florida in Gainesville. Dr. Edwards obtained his undergraduate training at the University of Notre Dame and his medical degree from the University of Miami School of Medicine. He completed his training in Rheumatology at the Rackham Arthritis Research Center and the Clinical Research Center, University of Michigan in Ann Arbor where he remained on the faculty as Director of Education and Training in the Division of Rheumatology. In 1983 he moved to the University of Florida where he is the former Chief of the Division of Rheumatology and Clinical Immunology and former Rheumatology Program Director for 15 years. For the past 19 years he has been Vice Chairman of the Department of Medicine and Program Director of the Medicine Residency Training Program at the University of Florida.

Dr. Edwards is an active member of many professional organizations including the American College of Rheumatology, American College of Physicians, the Association of Program Directors in Internal Medicine and is Past-President of the National Society of Clinical Rheumatologists. He is on the Executive Board of the Florida Chapter of ACP, the Co-chair of the Gout Interest Group for OMERACT between 2005-2016 and the Chairman and CEO of the Gout Education Society – a non-profit, patient education organization – for the past 14 years (www.gouteducation.org). He has authored over one hundred and fifty scientific articles, book chapters and reviews on the topics of hyperuricemia, gout, and purine metabolism. He is a Master of both the American College of Physicians and the American College of Rheumatologists.

Ellery Payton, Jr.

American Kidney Fund Ambassador

A native of Virginia Beach, Va., Ellery Payton, Jr.is a graduate of Howard University, and member of the Howard Gospel Choir. In 2000, he adopted his amazing son, Caleb Joshua at two weeks old, and he started living his life – long dream of being a father.

Ellery began meeting health challenges 2002, only to find out that his kidneys were failing. Being a single father, he was hesitant too began hemodialysis having such a young son. The sickness won eventually, and he began dialysis in December 2002. In March 2003, he received a live kidney donation from his cousin Carolyn Pruden. Experience rejection while in the hospital, Ellery experienced a near death experience because the kidney began leaking protein in his body. Over the next 8 years, life consisted of frequent hospital visits. Because the doctors had to use drastic medications to try and save the kidney, the heavy steroids caused bone damage resulting in a left leg fibula grafting to replace the femur head in his hip, in 2007, and eventually resulting in a total hip replacement in 2009. Ellery was forced to go back on peritoneal dialysis from January 2011 thru July of 2012. After discussing his illness on Facebook, one of Ellery’s church members, Kellen Leech offered to test to become his donor. Being a perfect match, the transplant took place on July 23, 2012, and has been working perfectly.

Ellery has worked with the American Kidney Fund since 2004, becoming an Ambassador, and often uses his voice to show people that End Stage Renal Disease is not a death sentence, and a new norm of life can be lived if managed properly. He has participated in two kidney events, going to Capitol Hill, to discuss the importance of keeping the cost of medicines and immunosuppressant’s low, since he and many other transplant recipients take 15 -17 medications per day, and again to speak up for the donors needing additional recovery time after organ donation. Ellery used his voice to help pass House Bill 944, House Bill 10, and Senate Bill 48, which all were passed on the same causes.

Ellery is now living, and enjoying life to the fullest, being the director of Renaissance, being fully engaged as a member of Kappa Alpha Psi Fraternity, Inc. and thoroughly enjoying his newly found passion playing tennis.

Theresa Caldron, RN

American Kidney Fund Ambassador

Theresa Caldron is a wife and mother of four, living in Oklahoma. In 2009, while working as an emergency room nurse she began having health issues. Eventually later that year she was a patient in her own emergency department being diagnosed with renal failure. After a long hospital stay and several biopsies and tests she was diagnosed with a rare auto-immune disease, Wegener’s Granulomatosis. Over the next few years her kidney function continued to decrease resulting in a kidney transplant in April of 2020.

One of the biggest health issues while dealing with renal failure was dealing with Gout. While trying to continue working as a nurse and manage being a mom of 4 young children, Gout made life very difficult. Theresa has worked on a project with AKF to help with increasing awareness of Gout and how it impacts everyday life.

Since her transplant Theresa has been working with AKF as an ambassador in Oklahoma to help state and local lawmakers aware of issues affecting those with renal failure and transplants. She has also worked with AKF as a member of the Unknown Causes of Kidney Disease summit.

Theresa feels a calling to continue to be an advocate and voice for those fighting renal failure, hoping to increase awareness, understanding, and quality of life for all of those affected by this disease and it’s effects on every day life.

Josie Cooper

Executive Director, Alliance for Gout Awareness

Josie Cooper serves as executive director of the Alliance for Gout Awareness, a nonprofit patient advocacy organization that works to increase awareness and understanding of gout, reduce stigma, and empower patients to successfully manage their disease. A coalition made up of 15 stakeholder groups from across the gout space, AGA advocates for improved care for patients living with gout.

Cooper has a background in communications, research, grassroots organization and campaign politics. Ms. Cooper has worked at the state and national level advising political campaigns and public affairs clients on supporter and stakeholder mobilization. She has worked on major races across the country, from presidential campaigns to Senate and congressional races. Prior to joining AfPA, Ms. Cooper worked for a DC-based consulting firm and for a trade association representing biotechnology companies.

Thursday, September 16, 2021

All About ADPKD (Autosomal Dominant Polycystic Kidney Disease)

12:30 PM EDT

Dr. Chris Rusconi, PhD

Chief Research Officer, PKD Foundation

Dr. Chris Rusconi serves as the Chief Research Officer of the Polycystic Kidney Disease Foundation, and in this role leads the Foundation’s research, education and advocacy efforts. Additionally, he serves as the Principal Investigator of the Foundation’s ADPKD Registry, and as a Co-Director of the Polycystic Kidney Disease Outcomes Consortium. Dr. Rusconi brings over 20 years of private and public biotechnology executive experience to this current role, with a strong technical background and extensive global pharmaceutical development and regulatory experience. Before joining the PKD Foundation, Dr. Rusconi served as the Chief Scientific Officer of Vitrisa Therapeutics. Prior to joining Vitrisa, he co-founded and served as the SVP for Discovery / Preclinical Development and Chief Scientific Officer of Regado Biosciences. Before that, he was Director of Research for the Program in Combinatorial Therapeutics and Assistant Research Professor of Surgery at Duke University Medical Center.

He received his B.S. with honors from the University of Kansas and earned his Ph.D. in molecular cell biology from the University of Colorado as an NSF Graduate Fellow in the laboratory of Nobel Laureate Dr. Thomas Cech. He completed his training as a Jane Coffin Childs Post-Doctoral Fellow in the Surgery Department at Duke University Medical Center.

Dr. Chun Lam, MD

Sr. Dir., Global Clinical Development, Nephrology, Otsuka America Pharmaceutical

Chun Lam, M.D. is a Senior Director in Global Clinical Development in Nephrology. She graduated from Columbia University’s College of Physicians and Surgeons, and completed Internal Medicine residency at Columbia-Presbyterian Medical Center and Nephrology fellowship at Beth Israel Deaconess Medical Center. Chun has been a teaching attending at Tzu-Chi Medical School in Taiwan, and an attending physician in Hospital Medicine at Regions Hospital in St. Paul, MN and at New York Presbyterian-Columbia, where she was Assistant Professor of Clinical Medicine. After private practice in Nephrology in Maryland, Chun joined Merck in Clinical Research working in the areas of Hypertension and Cholesterol Metabolism. She resumed Nephrology practice at The Rogosin Institute and as an Assistant Professor of Medicine at Weill Cornell Medical Center before joining Otsuka in 2020 . Her clinical Nephrology interests have included Home dialysis, Preeclampsia, and Acute care Nephrology.

Greta Ellis

Patient; PKD Foundation Advocate

Ms. Greta Ellis graduated from the University of Maryland, Asian Division in Okinawa, Japan. A native of Annona, Texas, Ms. Ellis currently resides in San Antonio, Texas. She is a medically retired accounting assistant.

Ms. Ellies was diagnosed with ADKPD at age 30 and was on hemodialysis for 13 years. This consisted of 3 weekly four-hour sessions. She received a bilateral nephrectomy in 2008. After the bilateral nephrectomy, Ms. Ellis embarked on a fitness routine on her on-dialysis days, which included Zumba classes. She credits her improved weight and mobility to her dedication to a fitness routine. Ms. Ellis received a kidney transplant in October of 2017. She currently volunteers with the San Antonio Chapter of PKD and Walk for PKD.

Thursday, September 16, 2021

The Kidney Transplant Process: What You Need to Know

3:00 PM EDT

Dr. Elaine Ku, MD, MAS

Associate Professor, Divisions of Nephrology and Pediatric Nephrology, University of California, San Francisco

Dr. Ku is a pediatric and adult nephrologist and a clinical epidemiologist. She is an Associate Professor at the University of California San Francisco in the Divisions of Nephrology and Pediatric Nephrology. She is also Director of the Nephrology Transition Clinic, which focuses on helping adolescents and young adults transition to adult care. Dr. Ku sees kidney transplant and chronic kidney disease patients in her clinic.

The global context of her research program focuses on understanding differences in the epidemiology, clinical management, and outcomes of children versus adults with kidney disease and the conduct of clinical trials to test interventions that will improve survival of patients with kidney disease. Her specific areas of focus currently include 1) cardiovascular risk in patients with kidney disease; 2) disparities in access to kidney transplantation and transplant outcomes; and 3) risk factors for progression of chronic kidney disease.

LeighAnn Saylor

Caregiver and American Kidney Fund Ambassador

LeighAnn Saylor is the Founder and Executive Director of Mulligans Living Kidney Donors. A non-profit located in Louisville, Kentucky dedicated to helping individuals living with Terminal End Stage Renal Failure (ESRD) get their lives back through Living Kidney Donor Transplantation.

LeighAnn grew up in the Louisville, Kentucky and attended The University of Louisville and went on to a successful career in Real estate. While attending the University of Louisville, she met her husband, Michael, and they were married in 1987. She was determined to have a “NORMAL” adult life, but learned right away that what she thought of as NORMAL, was not going to be in the plans. Mike broke his neck just 3 weeks after they were married in a car accident and LeighAnn had to grow up overnight. Miraculously, he made a full recovery after 6 months and they went on to raise 3 amazing sons.

In 2009, Mike was diagnosed with ESRD (end stage renal failure) at 42 years old and given 5 to 10 years to live on dialysis. This shook the family to the core right in the middle of the best years of their lives. LeighAnn took Mike to the Mayo Clinic where she learned that a Living Kidney Donor Transplant would save his life and keep him off of dialysis. She quickly found out that navigating through the Transplant journey is extremely difficult as there was no guidance available. LeighAnn had to figure out how to navigate the road to finding a Living Donor and get approved for Transplant on her own.

LeighAnn knew God had been preparing her and making her strong her entire life for a purpose. He put Soldiers in her path that if not for them, Mike would not have survived. Not believing in coincidences, it was now up her to use her knowledge to help the Voiceless. She has dedicated the rest of her life to eradicating the waiting list for Kidneys through Living Donation. In nine years, she and her organization have helped to facilitate 75 + Kidney Transplants.

LeighAnn is a public speaker and educates on the importance of Living Kidney Donors across the country. She was awarded the Prestigious Bell Award by WLKY & The Spirit of Louisville. She is an Ambassador for the American Kidney Fund, a coach for the National Kidney Registry and has received the commission of Kentucky Colonel (the highest title of honor bestowed by the Governor of Kentucky). She is currently writing her Memoire.

LeighAnn and her husband Mike are very active in their church. Mike is The Grand Knight of the Knights of Columbus Chapter that he started at St, Margaret Mary Catholic Church. They are also both involved with Habitat for Humanity, Hand in Hand Ministries, Special Olympics, Knights of Columbus, and other local volunteer organizations.

LeighAnn was a competitive dancer, swimmer and diver while growing up and she loves to sew as a hobby.

LeighAnn and Mike share a love for football and travel. They now enjoy spending all of their free time with their family and grandbabies. None of which would be possible if it weren’t for his Living Donor Kidney.

Michael H. Saylor

Patient and American Kidney Fund Ambassador

Michael (Mike) Saylor received the Gift of Life from a Living Kidney Donor in 2011.

He was diagnosed with IGA Nephropathy in 2009 when he was 42 years old and learned he was already in Stage 4 Kidney Disease at diagnosis and was told to go home and figure out what kind of dialysis he wanted to do.

Mike is an Electrical Contractor in Louisville, Kentucky and had wired dialysis centers as a young apprentice. When he was working, he was extremely active and was the head football coach for the Catholic grade school system in the Archdiocese of Louisville and had been for 16 years.

Knowing absolutely nothing about kidney disease, Mike and his wife, LeighAnn, began studying kidney disease and ended up travelling to the Mayo Clinic. They were advised to move towards a living kidney donor transplant as a means to avoid dialysis. His wife LeighAnn took to social media and the response was overwhelming. Approximately 20 people came forward and he received his second chance at life on Oct. 5, 2011, never having to spend a day on dialysis. His Living Donor (Tim Clark) was a friend he hadn’t seen in over a decade. They had played high school football together back in 1979.

The entire experience was a dark and difficult path that turned into a beautiful miracle. Mike, LeighAnn and his donor, Tim, realized they needed to help others navigate the journey. The three of them founded Mulligans Living Kidney Donors in 2012. They are determined to make it easier for others on the same journey by using their own life changing experience to coach others. It’s all about awareness, education and helping the voiceless. He is now 10 years post-transplant and is back to living his active life.

Mike has his Master Electricians License, Siemens, Designer/installer- PLC Certification, Thermography ITC Certification. He is a member of the IECA, and a graduate of FBI Citizens Academy. Mike is also very involved in his church. He founded the St. Margaret Mary Council of the Knights of Columbus where he has served as Grand Knight. He is a member of the Ancient Order of Hibernians, regularly volunteers with the Special Olympics, Little Sisters of the Poor Soup Kitchen, Hand in Hand Ministries, Habitat for Humanity, Ambassador for the American Kidney Fund and a coach for the National Kidney Registry.

Helen Christensen, RN, MHA

Living Kidney Donor Facilitator, UCSF

Helen started her career as a Critical Care RN in San Jose California. She has held multiple leadership positions in healthcare. She has worked in Transplant and Donation for over 30 years. She came to UCSF in 2012 to work with the kidney transplant team. Her current focus is helping people being evaluated as a living kidney donor. She also works with recipients to encourage them to find a living kidney donor.

When she is not working her passions are her two grown children, baking and making pottery.

Dr. Katherine M. Wang, MD, MS

Associate Physician, Brigham & Women’s Hospital, Division of Renal Medicine

Dr. Wang is a Clinical Research Fellow at Harvard Medical School and an Associate Physician at Brigham and Women’s Hospital in the Division of Renal Medicine. During her fellowship at Stanford University, she was supported by the AKF Clinical Scientist in Nephrology Program to study hypertension and cardiovascular outcomes in patients with kidney disease. Her current research focuses on investigating the role of bioimpedance analysis and biomarkers in aiding clinical decision-making. She is also interested in the implementation and evaluation of patient-centered interventions to improve outcomes in persons with end-stage kidney disease.

Living Well After a Kidney Transplant

10:00 AM EDT

Dr. Silas Norman, MD, MPH

Associate Professor of Medicine, University of Michigan

Dr. Silas Norman was born and educated in Detroit. He attended the University of Michigan, Ann Arbor, graduating with a degree in psychology. He then attended Wayne State University School of Medicine, graduating with honors, and was elected to the Alpha Omega Alpha Honor Medical Society. After completing an internal medicine residency at Baylor College of Medicine in Houston, Dr. Norman returned to the University of Michigan to pursue nephrology and transplant nephrology fellowships.

Dr. Norman has been on staff at the University of Michigan since 2002 working as a nephrologist in the transplant program. Dr. Norman helped create a program to transplant HIV-positive individuals and the development of outreach satellite clinics to allow patients greater access to transplant opportunities. Dr. Norman currently serves as the Medical Director of the Transplant Clinics and the Co-Medical Director of Kidney and Pancreas Transplantation. Dr. Norman’s research interests include kidney transplantation in HIV-infected patients, improving access to transplantation and the evaluation of medical frailty in kidney transplant candidates.

In addition to his academic pursuits, Dr. Norman volunteers with a number of well-regarded organizations. Dr. Norman has served on the Board of the American Kidney Fund for the last several years and is a member of the American Society of Transplantation IDEAL taskforce. He serves on the American Board of Internal Medicine Nephrology Exam Committee. He served for over a decade on a number of committees of the United Network for Organ Sharing and served for several years on the Scientific Advisory Board of the National Kidney Foundation of Michigan, and is currently a member of the NKFM the Board of Directors. In addition, Dr. Norman is also active with the Minority Organ Tissue Transplant Education Program (MOTTEP) Detroit Foundation Board.

Carolyn Feibig, MS, RD, CCTD

Thoracic Transplant Dietitian, Inova Heart & Vascular Institute

Originally from Saint Louis MO and moved to Washington DC for her dietetic internship. Prior to becoming a dietitian, she was a 5th grade teacher. Carolyn became interested in Kidney nutrition while doing her undergrad in Nutrition and Dietetics. She has worked with people on dialysis and as a Kidney transplant dietitian. Carolyn has been volunteering with American Kidney Fund since 2015. She works with the AKF on many projects including presenting multiple nutrition education webinars, reviewing The Kidney Health Coach, major content developer for the Kidney Kitchen and is currently on the inaugural Dietitian Action Group. She also volunteers with the National Kidney Foundation (NKF) since 2012 as a subject matter expert speaker, is on the NKF Medical Advisory Board for the Capital Area and was awarded the NKF’s Regional Recognized Renal Dietitian for Region 2 (Southeast United States) in 2018. Carolyn has also donated her time as an expert in the field of Renal Nutrition for American Association of Kidney Patients (AAKP), Alport Syndrome’s Foundation (Annual Family Conference in 2020) and other renal nonprofit groups. On the lighter side she tries to live her life by some of her universal truths: The more you know the more interesting your dinner parties, the prequels to Star Wars should never have been made, art is all around you not just hanging in a museum, people who are ‘cool’ are boring, the best way to show love is in the kitchen, people who are outdoors seem happier, traveling is a good way to get over yourself, spontaneous dance parties keep you sane, eat food not supplements, don’t buy organic buy local, and being a good person is important.

Crystal Scott

Patient & American Kidney Fund Ambassador

Crystal is committed to contributing to the fight against kidney disease and regularly speaks to anyone and everyone about the importance of protecting your kidneys. Originally from Rochester, New York, she now resides in Silver Spring, Maryland, putting her close to the nation’s capital and her advocacy efforts in congress.

Crystal’s kidney journey began suddenly after moving to Silver Spring in the fall of 2011. One day in 2012, as she was getting ready for work, she experienced what felt like an intense asthma attack while she was brushing her teeth. The weakness was so debilitating, she had to immediately sit down. After calling out of work, she tried to make it to the hospital but had to call for an ambulance due to the severity of the symptoms. When she woke up in the ICU, she was informed she was suffering from kidney and heart failure. After a week in the ICU and six-weeks in the hospital, she was placed on dialysis thus beginning her kidney journey. Crystal was on in-center dialysis for about three months before transitioning to peritoneal home dialysis for 6.5 years. She received a deceased donor transplant in December of 2018.

She is thankful for her nephrologist and her kidney team for their advocacy and guidance through her transplant process. Due to their support, she was able to complete her tests and be placed on the transplant list soon after her diagnosis.

Crystal has been an AKF Ambassador for over five years and has advocated before elected officials at the local and federal level on various occasions. She has spoken out in favor of the Living Donor Protection Act and the need to expand Medicare coverage for transplant recipients beyond three years to life-time benefits. She is especially passionate about expanding coverage for immunosuppressant medication to protect the precious gift of a donated kidney.

In her free time, Crystal is an avid movie buff and enjoys watching any movie, including hidden gems; old movies are among her favorites! She looks forward to returning to walking the national mall, watching plays, and attending cultural and music events after the Covid-19 pandemic.

Michael Spigler, MCHES

VP of Patient Services & Kidney Disease Education, AKF

Mike Spigler has served as Vice President of Patient Services and Kidney Disease Education for the American Kidney Fund (AKF) since July 2015. Mr. Spigler oversees a spectrum of programs and services: prevention activities, top-rated health educational resources, clinical research and direct financial assistance that enables kidney patients to access lifesaving medical care, including dialysis and transplantation.

Mr. Spigler has more than 20 years of experience in creating and managing health education programs for a multitude of chronic health conditions, including kidney disease, cancer, food allergies and anxiety disorders.

Friday, September 17, 2021

Kidney Disease & Mental Health

12:30 PM EDT

Dr. Daniel Cukor, Ph.D.

Director, Behavioral Health, The Rogosin Institute

Dr. Cukor is currently the Director of Behavioral Health at The Rogosin Institute, a kidney treatment and research institute, in New York City. He received his Ph.D. in Clinical Health Psychology from Ferkauf Graduate School (2002). His research and clinical focus has been on the psychosocial issues relevant to patients with end stage renal disease. He has done novel work developing and testing treatments for depression, insomnia, pain, adherence and anxiety for people with renal failure. He lectures frequently on psychosocial issues for patients with chronic kidney disease and has written extensively in the scientific literature, with his work cited over 3,500 times. He is also the lead editor of the recent volume “Psychosocial Issues in Chronic Kidney Disease”.

Dawn P. Edwards

Wellness Ambassador, Rogosin Institute

Self-described 27 Year Chronic Kidney Disease Warrior, Dawn P. Edwards, a nocturnal home hemodialysis patient, has experienced first-hand, every renal replacement modality including a kidney transplant, rejection and return to dialysis. As a result, she has a plethora of insight into the needs of people with Chronic Kidney Disease. Dawn is dedicated to improving the quality of life of people with kidney disease, and is also a resource to her community, sharing her story and educating patients, professionals and the public about the importance of maintaining a healthy lifestyle and the relationship between hypertension, diabetes and kidney disease, especially among people of color and low socioeconomic status.

Dawn has served the community for over 25 years through the IPRO ESRD Network of New York in multiple roles including employment as their Community Outreach Coordinator. She currently serves on many kidney disease related boards such as: IPRO ESRD Network of New York’s Patient Advisory Committee (PAC), the IPRO Board of Directors, the Forum of ESRD Network’s Kidney Patient Advisory Council (KPAC), Network Coordinating Committee (NCC) Legacy Subject Matter Expert (SME) and is the CEO of her own Patient-run Kidney Disease Advocacy Group, the NYS CKD Champions. Dawn has successfully reinvented herself by reentering the workforce as a Patient Advocate for Fresenius/NxStage and a Wellness Ambassador for the Rogosin Institute, She believes that Faith Family and Education are the keys to her longevity, and every day is an opportunity to thrive, not just survive.

Hannah Graves, LMSW

Transplant Outreach Social Worker, Piedmont Transplant Institute

Hannah Graves is a native of Milwaukee, Wisconsin. Attending school in the community, Hannah found her calling in psychology and pursued the direction of a well-placed guidance counselor to pursue social work. Graduating in 2009 with a Bachelor of Arts in Psychology, Hannah decided to attend Graduate School for Social Work at the University of Wisconsin Milwaukee at the Helen Bader School of Social Welfare. While here, Hannah met influential professors and mentors who guided her career path. After graduating in 2011 with her Master’s Degree in Social Work, Hannah began working for United Way of Greater Milwaukee. It was here that she learned from very talented staff the work that comes with social work. Life called Hannah to Atlanta, GA in 2013 where she completed some odds and ends jobs in support of her personal relationship with her now husband. Working in hospice, short-term rehab and then finally dialysis from 2016 to 2019 afforded opportunities to learn and advocate for the best quality of life for patients living with End Stage Renal Disease. Now in 2021, Hannah has the greatest opportunity of all serving with the talented and dedicated professionals at Piedmont Transplant Institute offering second chances to patients through transplant. Hannah currently lives in Marietta, Georgia with her husband and their four cats, Chloe, Daisy, Emma and Gracie.

Carlos Aparicio, MSW, LCSW-C

Director of Health Initiatives, American Kidney Fund

Carlos Aparicio is the Director of Health Initiatives at The American Kidney Fund. Mr. Aparicio is a Licensed Clinical Social Worker who joined the American Kidney Fund in March 2020 after working for over 10 years overseeing social services for the City of Rockville, Maryland.

Carlos has over 15 years of experience in program planning, implementation, and evaluation, including oversight of community schools programs, youth and family initiatives, and emergency assistance programs. For more than 10 years he oversaw grant programs providing funding to community clinics, homeless shelters, senior service initiatives, and public housing. He has served as a subject matter expert on multiple strategic planning and grant evaluation committees.

Previously, Carlos also worked as a children, youth, and family psychotherapist in school and community-based settings. Much of his work focused on providing services to clients in disadvantaged communities, where he advocated on behalf of his clients and their families in educational, medical, and social service settings.

Carlos earned his Master’s degree in Social Work from the University of Maryland, Baltimore, and a BA in Sociology with a concentration in Social Stratification from the University of Maryland, College Park. A native of Bogotá, Colombia, he currently resides in Rockville, Maryland with his wife, their rambunctious son, and their 100 lb. Alaskan Malamute lapdog.

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AKF works on behalf of the 37 million Americans living with and at risk for kidney disease. From prevention to life after a transplant, AKF supports people wherever they are in their fight against kidney disease.

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