LaVarne Burton is President and Chief Executive Officer of the American Kidney Fund (AKF). She has led AKF since 2005, propelling the organization to many notable milestones to support the 37 million Americans living with kidney disease, with programs addressing early detection, disease management, financial assistance, clinical research, innovation and advocacy.
Ms. Burton previously 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. Before 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. She also was President of the Pharmaceutical Care Management Association (PCMA), the national trade association representing pharmacy benefit managers.
Ms. Burton received her Bachelor of Arts degree from Howard University and Master of Arts from George Washington University.
Ken Sutha, MD, PhD is a board certified pediatric nephrologist at Lucile Packard Children s Hospital Stanford (LPCH) and Stanford University School of Medicine in Palo Alto, CA. He devotes his time to a combination of patient care, advocacy, and research. In addition to his clinical duties at LPCH, which has performed the largest volume of pediatric kidney transplants in the US over the past 5 years, he serves on the LPCH Ethics Committee and National Kidney Foundation Transplant Advisory Committee, as well as on the board of the American Living Organ Donor Fund. He is also co-chair of the Stanford Medicine Alliance for Disability Inclusion and Equity and volunteers as a Donate Life Ambassador for Donor Network West. Additionally, he has been recognized nationally for his advocacy as the 2019 American Kidney Fund Hero of Hope and for his research as an American Society of Nephrology Jared J. Grantham Research Scholar.
Melissia Baker is a kidney patient and a kidney education advocate. She is currently battling kidney disease while searching for a Living Kidney Donor. Melissia has been on dialysis for the last ten years but she hasn’t let her kidney disease deter her from her dreams. During her fight with kidney disease, Melissia became a foster mother and a proud adoptive mom to her precious ten year old son. Her son is what keeps Melissia motivated to stay as healthy as possible while searching for a Living Kidney Donor Hero. Melissia advocates with AKF on the importance of kidney health and kidney-related issues. Melissia believes knowledge is power and kidney patients have the right and responsibility to understand their disease in order to receive the best possible treatment. Melissa enjoys working with AKF as a Kidney Advocate because it creates meaning and purpose in her battle with kidney disease. She is proud to be part of such as awesome team!
Della Major is the Founder and CEO of LYVE, NFP (Living Your Life Victorious and Empowered) and CEO of Reclaim and LYVE, LLC. As an End Stage Renal Disease (ESRD) patient since November 2010, Della is intimately aware of the challenges faced by those who live with chronic illnesses. Della is a certified Kidney Health Coach for the American Kidney Fund, a member of the Patient Advisory Council (PAC) Network 10, a Subject Matter Expert (SME) for the National Coordinating Center (NCC) Patient and Family Engagement Learning and Action Network, a member of the Medical Review Board for Network 10, and a PAC member for the National Kidney Foundation of Illinois. Della advocacy work within the Renal community has been highlighted on several national platforms including WBBM 2 news, ABC 7 news, and NKFI The Journey Podcast. Della is the author, most recently, of From Triggered to Transformed: A Journey to Self-Discovery and Purpose.
Amanda Lane is a renal dietitian, Certified Diabetes Care and Education Specialist and Founder of Healthful Lane Nutrition LLC. While working with dialysis patients, Amanda became passionate about patients with CKD when she learned most of her dialysis patients had not met with a dietitian prior to dialysis. She serves on the Dietitian Advisory Board for the American Kidney Fund which was instrumental in the development of Kidney Kitchen Pro, a no cost resource for RDNs working with kidney disease patients. Amanda enjoys helping patients understand the complexities of diabetes and CKD by working to remove the fear and stigma of both diseases. She values the links between food, culture and health and enjoys seeing patients thrive while enjoying their preferred foods and living a healthful lifestyle.
• B.S. in Journalism from Boston University
• Master’s degree in Education from Mount Saint Mary’s University.
• Since 2005, Tamara Ruggiero has developed and led the American Kidney Fund’s marketing and communications department.
• 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.
Dr. Nicholas is a tenured Professor of Medicine at the David Geffen School of Medicine at UCLA in the Nephrology; General Internal Medicine; and Endocrinology, Diabetes and Metabolism Divisions. She is NIH-funded and studies diabetic kidney disease (DKD) mechanisms, novel therapies, biomarkers, and CKD disparities. She is President of Women in Nephrology, Vice Chair of the UC Council on Research Policy, Chair of the UCLA Nephrology Racial Health Equity Committee, and an NIH Study section, and serves on the ASN Health Care Justice, and Kidney Health Initiative APOL1 Steering Committees, and the AHA Council on Kidney in Cardiovascular Disease. She received the NKF Medical Advisory Board Distinguished Service and the Minority Access, Inc. National Role Model Faculty Researcher Awards. She has >120 original publications on DKD, hypertension and health disparities, and is on the editorial board for the American Journal of Nephrology and the American Journal of Kidney Diseases.
Dr. Patrick Gee had been a peritoneal dialysis patient since December 2013. On April 21, 2017, Patrick received a kidney transplant at the Hume-Lee Transplant Center at the Medical College of Virginia/Virginia Commonwealth University. After spending 33 days in the hospital, four surgeries and a 47-day wait until his kidney began to function, Patrick is back to advocating for more comprehensive healthcare, patient engagement, community educational resources, and a better quality of life for kidney patients.
He co-founded iAdvocate, a non-profit organization that focuses on disseminating health and wellness educational resources on diabetes, obesity, kidney disease and cardiovascular disease to underserved, undervalued and disenfranchised communities. An ordained minister, Patrick’s motto is “I am a Voice for the Voiceless and the Face for the Faceless in the fight against kidney disease.”
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.
Dr. Kirk Campbell is a 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 podocyte cell biology, experimental glomerular disease and clinical trials in the rare kidney disease space. The work centers on advancing the understanding of the underlying mechanisms involved in glomerular disease progression while identifying potential targets for therapeutic intervention. Dr. Campbell is an elected member of the American Society for Clinical Investigation. He is a Past-President of the New York Society of Nephrology, a member of the Board of Directors of the Nephcure Foundation, a standing member of the Pathobiology of Kidney Disease (PBKD) study section at the National Institutes of Health.
Ashté Collins, M.D., FASN is a physician in the Division of Kidney Disease & Hypertension at the George Washington University Medical Faculty Associates and an Associate Professor of Medicine at the George Washington University School of Medicine and Health Sciences. He graduated from Xavier University of Louisiana with a B.S. in Biology and received his medical degree from the University of Chicago Pritzker School of Medicine.
Dr. Collins completed his internal medicine residency at the George Washington University Medical Center. He then served as Chief Medical Resident at George Washington University, and was nominated to Alpha Omega Alpha Medical Honor Society during his tenure as Chief Medical Resident. After chief residency, Dr. Collins completed his nephrology fellowship training at the George Washington University Medical Center. He is a Fellow of the American Society of Nephrology.
Dr. Collins is the director of the outreach practice at George Washington University’s Division of Kidney Disease and Hypertension, expanding GWU’s reach beyond the university campus. He is the medical director of the Fresenius NxStage Lanham dialysis center, which is ranked #1 in the Capitol Lakes Region for quality indicators in patients using home dialysis modalities. He often receives accolades from medical students and residents alike for providing outstanding education and has mentored several medical students in the GWU School of Medicine’s Clinical Apprenticeship Program. He has been nominated to the Washingtonian’s “Top Doctor” list multiple times.
Dr. Collins’ clinical interests include chronic kidney disease, acute kidney injury, hypertension, kidney stones, continuous renal replacement therapies, and home hemodialysis. His research interests include cardiovascular disease in chronic kidney disease, medical education, health disparities in patients with kidney disease, and outcomes in end-stage kidney disease patients. He has partnered with the American Society of Nephrology to produce the nationwide annual nephrology workforce report and nephrology fellows’ survey.
Dr. Blake Shusterman is a Greenville, South Carolina-based nephrologist, and cooking enthusiast passionate about helping his patients enjoy healthy, kidney-friendly foods. Dr. Blake, as he is known, is also the creator of The Cooking Doc®, a popular online cooking show and educational site dedicated to helping people manage their kidney disease through delicious meals. He is the author of The Cooking Doc’s Kidney-Healthy Cooking – A Modern 10-Step Guide to Preventing and Managing Kidney Disease.
He is the past president and physician partner at a large nephrology practice in Greenville. Dr. Blake received his medical degree from Ohio State University and completed his internal medicine residency and nephrology fellowship at the University of Virginia. As a board-certified nephrologist, he also serves as medical director at multiple dialysis centers and is a clinical assistant professor at the University of South Carolina School of Medicine Greenville.
Jemetra Collins, is Director of Professional Education at the American Kidney Fund (AKF). Jemetra joined AKF in 2016, with more than 10 years of combined experience in healthcare administration at local and state government, private and non-profit organizations.
In her role at AKF, she supervises the development, operations, and external relations of AKF’s professional education programs, resources, and activities.
Jemetra holds a Bachelor of Science degree in healthcare administration from Langston University.
Dr. Gutierrez is currently a Professor of Medicine, Marie S. Ingalls Endowed Chair in Nephrology Leadership and Director of the Division of Nephrology at the University of Alabama at Birmingham. Using both epidemiologic and patient-oriented clinical research approaches, the primary focus of Dr. GutiÈrrez s group has been elucidating the mechanisms by which disorders of bone and mineral metabolism and nutrition impact outcomes in individuals with chronic kidney disease. His group has also focused on how environmental and genetic factors impact disparities in cardiovascular and kidney disease. Dr. GutiÈrrez has a track record of publications, including feeding studies using physiological end-points, and other high-impact studies that have highlighted the associations of nutrition, obesity, metabolic disease, and environmental factors with outcomes in the general population and in individuals with chronic kidney disease.
Holly Bode is the Vice President of Government Affairs at the American Kidney Fund where she leads federal and state advocacy and public policy efforts. Before coming to AKF, she worked at the Alliance of Community Health Plans where she directed their federal lobbying and communications work for nearly five years, with a focus on Medicare Advantage and other health plan issues. She also worked at Washington Council Ernst & Young and at UnitedHealth Group where she coordinated the federal affairs strategy for United’s Medicare and Medicaid products. Holly also worked for on Capitol Hill for over nine years for various members of the U.S. Senate and House of Representatives as well as five years at the Department of Health and Human Services under Secretary Donna Shalala.
Kevin began volunteering for Alport Syndrome Foundation (ASF) in 2012 at age 26 after experiencing unexpected renal failure due to Alport syndrome. He was previously misdiagnosed with benign familial hematuria. After two years on dialysis, he received a living donor transplant from a close friend in May 2014. Kevin s desire to help others in the rare disease community led to his position as ASF Social Media Specialist in 2014, part-time Patient Outreach Coordinator in 2016, and full-time Director of Communications & Patient Engagement in 2019. Kevin has served as ASF s Associate Director since January 2022. He has facilitated the teen program at ASF Alport Connect Meetings, represented ASF at various patient advocacy events and conferences, and co-moderates the ASF Facebook Support Group Page.
• B.S. in Journalism from Boston University
• Master’s degree in Education from Mount Saint Mary’s University.
• Since 2005, Tamara Ruggiero has developed and led the American Kidney Fund’s marketing and communications department.
• 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.
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. 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 2023, Hannah has the greatest opportunity of all working with both Apex Health Innovations, a global healthcare technology company, and Piedmont Transplant Institute to truly support patients through their transplant journey. Hannah currently lives in Marietta, Georgia with her husband, daughter, and their four cats.
For the last decade, Jonathon M. Seidl has been telling stories. In fact he’s written over 6,000 of them, first after helping start a top-50 news site, then as the editor-in-chief of the popular non-profit I Am Second. He now runs his own digital media consulting and content creation firm called The Veritas Creative.
Jon has seen how the power of storytelling can transform people, businesses, and culture, especially after sharing his own story of battling anxiety and OCD. His passion is to help people with mental health struggles, while also sharing what he s learned telling stories for and working with some of media s biggest names and organizations, including Glenn Beck, Kirk Cameron, and Chip and Joanna Gaines.
His book on anxiety, Finding Rest, released in 2021 and instantly became a #1 Amazon bestseller, toping the charts in several categories. In fact, it shot up to become the #17 new release on all of Amazon and became a top 100 bestseller on all of Amazon as well.
My name is Kenneth Cook and I am 61 years of age. I am a PROUD kidney transplant recipient as of October 2020. My journey with kidney disease started during my early fifties, and it quickly resulted into Chronic Kidney Disease (CKD) because of other issues (diabetes and high blood pressure). After experiencing total kidney failure, I was on dialysis for over 5 years. I experienced peritoneal dialysis, and I learned the advantages and disadvantages of performing this type of self treatment on myself. I also experienced hemodialysis, and I understand the physical demands that this type of treatment puts on the body. Along my journey, the Kidney Foundation has helped me tremendously both financially and educationally. I would also like to thank two people who have played the MOST important roles in my kidney journey. The first person that I would like to thank is my wife(Debra), and the next person that I would like to thank is my kidney donor(Jon Seidl). NEVER GIVE UP!
Debra is a graduate of the University of Southern Mississippi and holds a Bachelor of Science in Business Administration and Personnel Management.
Debra is from Richton, Mississippi, a small town where everyone knows and cares for each other. She is dedicated to improving education for all students by being an avid supporter of the Big 3 (AAA) in Education (Academics, Fine Arts and Athletics). She currently serves as a member of the Long Beach Excellence in Education Foundation for the Long Beach School District. Her calling in life is helping those less fortunate and helping them get on a path to a better life.
She is married to Kenneth Cook, who retired from Aerojet Rocketdyne at Stennis Space Center. They have five sons. Jabrelle, Ken Chad Darren and Kobe. Debra and Ken have eight grandchildren ages 16, 13, 11, 10, 9, 4, 2 and 8 months. They had a cat named Midnight whom they rescued after Hurricane Katrina, and he recently passed away.
Elizabeth is a proud kidney donor! She donated on behalf of her mother-in-law through the paired kidney exchange program in March 2021. She is also a mother, wife and morning radio show host on the “Elizabeth and Radar Show” on 99.1 The Mix in Milwaukee! She is passionate about organ donation and has made it her life’s purpose to educate and advocate about being a living donor.
Camille Hamme is a wife, mother and grandmother from Watertown, Wisconsin. Camille and her high school sweetheart Steve are celebrating their 43rd wedding anniversary this coming August. They enjoy spending time outdoors, hunting and fishing. They love spending time with their adult children and especially spending time with their two grandsons, Brayson and Jack! Camille is a kidney transplant recipient. She received her new kidney in March 2021 through the paired exchange program thanks to her daughter-in-law who donated her kidney on behalf of Camille.
I am 28 years old, from Richmond, Virginia. Currently I am an In-Center Hemodialysis Patient. I have been on Dialysis for 2 years and is currently listed for transplant at UVA. I started advocating because I want to make it easier for the next generation of kidney warriors to have access to all the resources possible. My current focus with my advocacy is community education and unity as well as mental health awareness in kidney patients.
This session is made possible thanks to the generous support of Satellite Healthcare.
Eric’s deep and rich background researching chronic kidney disease, in particular dialysis and related pharmaceuticals, will advance our home dialysis analytics capabilities and contribute to advancing clinical initiatives. Eric is recognized internationally for his deep knowledge of home dialysis and unique expertise in home data analytics. He is a sought-after speaker at national and international meetings and is widely published in the field of ESKD.
Eric will be an integral part of Satellite’s focus on innovation and advancing the company’s analytics and quality strategies. He will work closely with Sumi Sun, Vice President of Analytics and Quality, Dr. Brigitte Schiller, as well as the Medical Clinical Affairs, Research and Operations teams across the organization.
Eric has significantly influenced the organizations for which he has worked, including the United States Renal Data System (USRDS), NxStage/Fresenius Medical Care, and, most recently, Chronic Disease Research Group, where he served as Director of Home Dialysis Research. He has conducted studies in partnership with Amgen, Baxter, DaVita, NxStage, and the Peer Kidney Care Initiative among many others.
Eric graduated from St. Olaf College as valedictorian with a B.A. in Mathematics and attained an M.S. degree in biostatistics and a Ph.D. in epidemiology from the University of Minnesota. He will join Satellite Healthcare on December 1, 2021.
María Eugenia Rodríguez-León, MS, RD, CSR, LND is a Spanish-speaking renal dietitian living in San Juan, Puerto Rico. María started to work in dialysis in Chicago, IL, while studying her Master of Science in Clinical Nutrition. She has been working with dialysis patients since 2009 and with non-dialysis chronic kidney disease patients in private practice since 2013. María is also a preceptor to dietetic interns for the renal rotation. She enjoys speaking about different renal nutrition topics to different audiences: patients, nurses, dietitians, nephrologists and nephrology fellows. Maria has collaborated with PR and US-based nonprofit organizations such as Consejo Renal de PR, Colegio de Nutricionistas y Dietistas de Puerto Rico and Dialysis Patient Citizens Education Center to educate on different topics related to the renal diet. She is also part of the Dietitian Advisory Group in the American Kidney Fund. She provides individual and group online education to chronic kidney disease adults. María has witnessed how a well-planned kidney diet as part of the medical treatment can stop kidney disease progression.
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.
I received my undergraduate and medical degrees from Brown University and did my internal medicine residency and nephrology fellowship at the Columbia University Irving Medical Center. I spent 7 years at NYU-Winthrop Hospital where I was the fellowship program director and the director of nephrology clinical trials before being recruited back to Columbia. I am currently an associate professor of medicine in nephrology and a director of home dialysis at Columbia.
My research aims to test and implement interventions to improve quality of life and self-care in patients with chronic kidney disease (CKD) and end stage renal disease. To this end I have been the investigator on several studies that have examined the treatment of CKD associated pruritus in patients with ESKD.
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.
Fiona Lawless is AKF’s Sr. Director for Corporate Engagement. In this capacity she leads the management of AKF’s external relationships with corporate partners in support of the organization’s priority programs, and on behalf of the patients we serve. Fiona sits on various advocacy stakeholder coalitions and is passionate about amplifying the patient experience and also increasing awareness for AKF’s lifesaving resources. Prior to joining AKF, Fiona worked for a major national public-private partnership working between the federal government and private industry to raise national awareness for America’s rich and diverse heritage through creative partnerships with Fortune 500 companies and other strategic organizations. Her 20-year career includes experience in non-profit management, federal advocacy, fundraising, marketing, public speaking and communications, which affords her a unique ability to view challenges and opportunities from various angles.
A native Washingtonian and first generation American—a proud Bolivian and Irish American—Fiona is a graduate of the Holton-Arms School and Vanderbilt University, where she studied anthropology and archaeology and is a certified Historic Preservation Specialist. In her free time, Fiona enjoys playing tennis, throwing pottery, gallery hopping, and is a patron of the Baltimore Symphony Orchestra. She has maintained Board positions on the Eleanor Roosevelt Val Kill Partnership and the Association for Bolivian Women. She previously founded the Circle at Sewall-Belmont House, a young professionals’ membership that was dedicated to raising awareness for this premier women’s history site in the nation, now a National Monument.
María Eugenia Rodríguez-León, MS, RD, CSR, LND is a Spanish-speaking renal dietitian living in San Juan, Puerto Rico. María started to work in dialysis in Chicago, IL, while studying her Master of Science in Clinical Nutrition. She has been working with dialysis patients since 2009 and with non-dialysis chronic kidney disease patients in private practice since 2013. María is also a preceptor to dietetic interns for the renal rotation. She enjoys speaking about different renal nutrition topics to different audiences: patients, nurses, dietitians, nephrologists and nephrology fellows. Maria has collaborated with PR and US-based nonprofit organizations such as Consejo Renal de PR, Colegio de Nutricionistas y Dietistas de Puerto Rico and Dialysis Patient Citizens Education Center to educate on different topics related to the renal diet. She is also part of the Dietitian Advisory Group in the American Kidney Fund. She provides individual and group online education to chronic kidney disease adults. María has witnessed how a well-planned kidney diet as part of the medical treatment can stop kidney disease progression.
Antonio D. Cain, MBA, RDN, LDN is a Registered and Board-Certified dietitian. He was named the 2007 recipient for a Distinguished Service Award for a Grassroots Effort for obesity research conducted on Georgia Special Olympic Athletes. His work experience includes geriatrics, public health and pediatrics, private practice, home infusion, public speaking and food/clinical nutrition management and renal nutrition. In his spare time, he enjoys reading, outdoor activities and spending time with family.
Ruth D. Simon earned a BA degree from the University of North Carolina at Chapel Hill and went on to earn a Master of Social Work degree (MSW) from Norfolk State University. She is certified as a Licensed Clinical Social Worker and currently serves as Social Worker for two Fresenius Kidney Care dialysis clinics in her hometown of South Boston, Virginia. Prior to working in dialysis, she provided services in a public mental health setting for 20 years in this same rural location. Providing services in a rural location presents many challenges, and Ms. Simon is an advocate for health equity measures to address these barriers. In her spare time, she enjoys traveling, spending time with her family, and rescuing older Pekingese pups.
My name is Gabrielle Turner-Gee and I am the care for Quenton Turner-Gee. I’m 33 years old with a five year old and I work full time.
Dr. Norman is a transplant nephrologist, Clinical Professor of Medicine and the Co-Medical Director of Kidney and Pancreas transplantation at the University of Michigan. Dr. Norman is the immediate past-Chair of the American Society of Transplantation’s Inclusion, Diversity, Equity and Access to Life (IDEAL) Committee which works to minimize discrimination and improve equity in access to transplantation.
Dr. Norman’s research is focused on reducing health disparities in kidney transplantation and the evaluation of medical frailty. Dr. Norman is a member of the MOTTEP Detroit Foundation Board, the Board of Directors for the National Kidney Foundation of Michigan and the Chair-Elect of the American Kidney Fund board of Trustees.
Dr. Melancon is currently the Director of the George Washington Transplant Institute and the Medical Director of The Ron and Joy Paul Kidney Center at George Washington University Medical School. Dr. Melancon is a Professor of Surgery whose specialties include kidney, pancreas and liver transplantation as well as laparoscopic kidney donor nephrectomy. Dr. Melancon has spent his career trying to improve outcomes for the hardest to transplant patients and therefore has been an advocate for ABO incompatible organ transplantation, paired kidney exchanges, and immune system desensitization strategies. Recently Dr. Melancon and his team were the first ever to perform a fully ABO incompatible deceased donor kidney transplantation as well as a fully ABO incompatible living donor kidney transplantation in an individual with HIV infection. Dr. Melancon hopes that with novel immunosuppression protocols true transplant tolerance can be achieved.
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 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 the 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.
At eight years old, Evan Dame was diagnosed with kidney disease. Due to a poor diet, a sedentary lifestyle, and a lack of access to quality healthcare, the disease eventually caused Evan’s kidneys to fail at 27. Although his body exhibited symptoms of end-stage renal disease for a long time, it wasn’t until he was found unconscious and had to be rushed to the hospital that he started hemodialysis.
Evan gained considerable weight while on dialysis, eventually reaching 350+ lbs. He found comfort in food, especially junk food, which he often consumed late at night, sometimes to satisfy the ravenous post-treatment hunger many hemodialysis patients experience.
After losing close to 100 lbs. to be evaluated for transplant, Evan received a deceased donor kidney on December 9th, 2016, six months after being listed and five years after starting dialysis.
Now, six years post-transplant, Evan has lost a total of 160 lbs., is healthier than ever, and is excited to share his story with others.
Ryan Woolley, MSPH, RDN is the Director of Public Education at the American Kidney Fund. She provides strategic oversight in developing and managing evidence-based kidney disease education programs and resources. In her role she conducts formative research, contributes to proposal development, oversees project implementation, and leads outcomes evaluations.
Ryan is an experienced public health professional and a registered dietitian nutritionist and has an extensive background in both public health research and program evaluation. Prior to coming to the American Kidney Fund, Ryan was the Director of Program Evaluation and Design at the American Diabetes Association. She led the evaluation of the Association’s cross-departmental programs and strategy for the design and piloting of interventions. Her research measured health, behavioral, and psychosocial outcomes associated with national patient-targeted programs, professional education, research funding, and advocacy activities.
Ryan previously conducted research on community-based nutrition and physical activity interventions while at Johns Hopkins Bloomberg School of Public Health. She also gained clinical research experience and contributed to 5 peer reviewed publications while working at Massachusetts General Hospital.
Melanie Betz MS, RD, CSR, CSG is a Registered Dietitian who specializes in kidney stones. She is the founder of The Kidney Dietitian, an online business that provides easy-to-understand, evidence-based information about kidney stones and kidney disease. She has published her research in peer-reviewed journals investigating patient knowledge and adherence to renal diets, plant based diets in kidney disease and the role of nutrition in kidney stone prevention. She volunteers for the National Kidney Foundation of Illinois and the Renal Practice Group, a practice group of the Academy of Nutrition & Dietetics and is a member of the Dietitian Advisory Group for the American Kidney Fund. You can find her on Instagram @the.kidney.dietitian.
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.
Janice Powers is clinical dietitian who specializes in care of persons with kidney disease. She graduated from Iowa State University with a bachelor’s degree in nutrition and dietetics followed with a master s degree in counseling from the College of William and Mary. With over 20 years of experience, she has been employed with the Department of Veterans Affairs, multiple community dialysis centers and medical centers. She has been published in the Journal of Renal Nutrition and has appeared on local morning television shows as a nutrition expert. Janice enjoys bringing sensible nutrition tips to people of all ages. She currently lives in Southeastern Virginia and is inspired daily by her family.
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.
Amanda Lane is a renal dietitian, Certified Diabetes Care and Education Specialist and Founder of Healthful Lane Nutrition LLC. While working with dialysis patients, Amanda became passionate about patients with CKD when she learned most of her dialysis patients had not met with a dietitian prior to dialysis. She serves on the Dietitian Advisory Board for the American Kidney Fund which was instrumental in the development of Kidney KitchenÆ Pro, a no cost resource for RDNs working with kidney disease patients. Amanda enjoys helping patients understand the complexities of diabetes and CKD by working to remove the fear and stigma of both diseases. She values the links between food, culture and health and enjoys seeing patients thrive while enjoying their preferred foods and living a healthful lifestyle.
María Eugenia Rodríguez-León, MS, RD, CSR, LND is a Spanish-speaking renal dietitian living in San Juan, Puerto Rico. María started to work in dialysis in Chicago, IL, while studying her Master of Science in Clinical Nutrition. She has been working with dialysis patients since 2009 and with non-dialysis chronic kidney disease patients in private practice since 2013. María is also a preceptor to dietetic interns for the renal rotation. She enjoys speaking about different renal nutrition topics to different audiences: patients, nurses, dietitians, nephrologists and nephrology fellows. Maria has collaborated with PR and US-based nonprofit organizations such as Consejo Renal de PR, Colegio de Nutricionistas y Dietistas de Puerto Rico and Dialysis Patient Citizens Education Center to educate on different topics related to the renal diet. She is also part of the Dietitian Advisory Group in the American Kidney Fund. She provides individual and group online education to chronic kidney disease adults. María has witnessed how a well-planned kidney diet as part of the medical treatment can stop kidney disease progression.
Reggie began his yoga journey in November 2014 seeking to alchemize and navigate extreme professional adversity. Through disciplined practice, ruthless focus and surrender to inner peace he has adopted the yogic path, now as a 500 hour certified yoga teacher who has extensively studied with leading teachers such as Faith Hunter, Amy Ippoliti, Yogarupa Rod Stryker and Sri Dharma Mittra and countless other amazing teachers he has encountered along the way.
Reggie teaches Members of Congress, Congressional Staff, leading progressive organizations and individuals, sharing techniques for growing peace and ease as a foundation, not an afterthought. He also advises yoga communities, yoga studios, teachers, and the broader wellness industry on the importance of diversity and inclusion, opening the practice to all and eliminating exclusionary cultures and habits.
His teaching practice is designed for all levels and lifestyles, the only thing required is an open mind. The focus of his teaching is to bring more peace and balance to activists AND to guide the wellness community toward being more engaged, concerned citizens. Achieving this balance is how we catalyze transformative change.
In addition to his yogic activities, Reggie has held many senior strategic and logistical roles across a variety of fields, ranging from global marketing, digital and community organizing, government relations, international education to Presidential campaigning. He currently serves as a senior political strategist for a leading progressive campaigning organization, managing their relationships, impact, and communications with Capitol Hill. He received a B.A. in philosophy from Yale University and an MBA in international strategy from the Vlerick Business School in Belgium.
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 eGenesis , Bayer, CSL Behring, Travere Therapeutics, , Talaris, , Natera, ValenzaBio and Veloxis.. In 2017, Kevin was selected to be a Patient Editor, Clinical Journal of the American Society of Nephrology. In 2021, Kevin was awarded the American Society of Transplantation Transplant Advocacy Award. He has contributed or been primary author in over 15 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
• National Kidney Foundation, KAC, Diversity Workgroup
Meet our guest expert Elle Lee, licensed clinical social worker (LCSW). Elle experienced kidney failure from IgA Nephropathy. She received a kidney transplant in 2012 after 4 years on peritoneal dialysis. Her journey inspired her to become a therapist to help others cope with the emotional and physical struggles of kidney failure. Elle is now a licensed therapist and provides online therapy to help others in the kidney community manage the unique challenges of chronic illness and post-transplant.
As a 20-year veteran of kidney care, my primary focus has always been educating patients about chronic kidney disease (CKD). Reporting directly to a divisional vice president, I led a team of educators that taught thousands of patients about home treatment options, quality of care and reduced hospitalizations while slowing the disease progression. Today, as a certified health coach, my goal is to give patients what I wish I had when I was first diagnosed with CKD. Through prayer, knowledge and a positive attitude, I work one-on-one with the person to determine needs in order to improve quality of life. Drawing on my years of experience as both a social worker / educator and patient advocate, as well as my personal experiences with trauma and grief, I am able to offer an optimal lifestyle plans tailored specifically for each individual.
Hello! My name is Tamara and I am SO excited to be part of Kidney Action Week! I live on beautiful Vancouver Island in British Columbia, Canada, where I have been a stage 4 kidney patient since 2015. I credit nutrition and exercise for the stability that has kept me from renal failure, but it is definitely an ongoing challenge. As someone who has always struggled with my weight and fitness, I don t always succeed, but I never stop trying to nourish my kidneys and keep my blood pressure from going high. For me, it doesn t mean running marathons or lifting heavy weights; it simply means finding movement that brings me joy, in body or mind. I am a certified Fitness Instructor Specialist with CanFitPro, and I absolutely love teaching Zumba dance-fitness and BollyX, The Bollywood workout. So, here I am, sharing with you a taste of both, as we celebrate joyful movement in this fun and interactive dance session.
Joy is the Director of Outreach and Strategic Partnerships at American Kidney Fund where she develops the strategic direction of the health equity plan in the areas of prevention education, clinical trials, home dialysis, and transplants with the advisement and support of a coalition of patients and professionals. In addition to managing her team’s programmatic efforts, Joy leads the annual awareness and education event, Kidney Action Week.
Prior to joining American Kidney Fund, Joy was the Associate State Director of Community Outreach at AARP Maryland. During her tenure, she managed the recruitment and engagement of volunteer leaders, building relationships with local communities, leaders, and legislators, coordinating annual events such as volunteer luncheons and summits, along with planning and implementing other program and initiatives.
Joy spent several years within the community health field beginning as the Public Health Educator for the Baltimore County Department of Health and Human Services within the Colorectal, Breast and Cervical Cancer Program. She continued to further her career as the Community Health Manager at Susan G. Komen Maryland, followed by the roles of Program Coordinator for the Johns Hopkins University Urban Health Institute, and Women’s Services Health Educator at LifeBridge Health with Northwest Hospital. As a Master Certified Health Education Specialist, within these positions, Joy was able to develop her expertise in forming community partnerships, coalition building, volunteer management, grant administration, program planning, outreach, and education throughout the state of Maryland.
She received her Bachelor of Science degree in Health Education from Morgan State University and completed her Master of Health Science degree, with a concentration in Community Health from Towson University.
Dr. Anoop Sheshadri is a geriatric nephrologist who cares for patients with chronic and end-stage kidney disease. He earned his medical degree from the University of Texas Southwestern Medical School. He completed his residency at the UTSW Medical Center in Dallas and completed his fellowship in nephrology and a master’s degree in clinical research at the University of California, San Francisco. He is now an Assistant Professor in the Division of Nephrology at UCSF and the Nephrology Section at the San Francisco VA Medical Center.
Dr. Sheshadri’s overall focus is on improving outcomes and care for older patients with chronic kidney disease. He strives to help his patients find medical and lifestyle interventions that will improve their symptoms, quality of life and cardiovascular outcomes.
In his research, Sheshadri studies the effects of physical activity and exercise for patients who are being treated with dialysis, as well as ways to improve the ability of patients to engage in exercise. He is specifically interested in improving care for older patients on dialysis, as they are especially vulnerable to adverse health outcomes and therefore require a more specialized, multi-disciplinary approach than younger adults. To that end, his research also includes how to reduce the caregiving burden for caregivers of such patients. His current research focus has been on prehabilitation prior to kidney transplantation in older patients awaiting kidney transplantation and their caregivers.
After being diagnosed with chronic kidney disease in 2012, Bonnie was told she was in kidney failure six years ago now. Once she started peritoneal dialysis in July of 2020, she started experiencing challenges with maintaining an active lifestyle due to increased fatigue. In the winter of 2022, she was contacted to participate in Dr. Sheshadri’s research study on the role exercise has on patients’ health after transplant, which she started at the end of February. Bonnie received her transplant in April 2022 and is looking forward to sharing the impact exercise played on her health outcomes following transplant.
Janelle Gonyea RDN, LD, FNKF is a clinical dietitian with 35 years of experience as a renal dietitian, working with all stages of chronic kidney disease and its treatment options. She currently serves as a committee member for the update of the Academy of Nutrition and Dietetics’ National Kidney Diet, Medical Review Committee member for the Midwest Kidney Network, member of the American Kidney Fund’s Dietitian Advisory Group and co-editor for the AAKP Delicious! recipe series.
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 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 the 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.
Kellsey Reed RDN, LDN is a Registered Dietitian Nutritionist that specializes in chronic kidney disease. She is dedicated to giving those in the kidney community the best support possible. After working as a dialysis dietitian for years, Kellsey quickly learned that there was a huge lack of support given to those in the kidney community & that there was so much more we could be doing for those with CKD! That is exactly why she started her private practice CKD Nutrition LLC, to help give those with CKD stages 1-5 the best support and guidance possible to learn how to eat for their kidney disease for life. There is so much that you can do to help protect your kidneys and help prevent further progression of your CKD & Kellsey wants to help you get there!
Sue-Ellen Anderson-Haynes, MS, RDN, CDCES, LDN, NASM-CPT is a Registered Dietitian Nutritionist, Certified Diabetes Care and Education Specialist (CDCES), and a Nutrition & Diabetes Educator at Joslin Diabetes Center.
She is the founder & CEO of 360Girls&Women®LLC – a holistic wellness company for girls and women – and a National Academy of Sports Medicine (NASM) Women’s Fitness Specialist and Certified Personal Trainer. She is a member of the Academy of Nutrition & Dietetics and, the Boston Organization of Nutritionist and Dietitians of Color (BOND), a Board Advisor for the Boston Alliance for Diversity in Dietetics (BADD).
She has co-authored articles in several scholarly medical publications. Sue-Ellen obtained her Bachelor of Science in Food Science & Human Nutrition, Specialization Dietetics, with a minor in Health Science Education from the University of Florida and her Master of Science in Nutrition & Wellness from Andrews University, Summa Cum-Laude.
She enjoys cooking, reading, and outdoor activities with her husband and two children.
Alana Hunnicutt, also known as Chef Alana, was born and raised in Washington, DC. She is a wife, mom, and chronic disease warrior.
Her love for cooking started when she was 7 years old. She cooked her first box cake completely on her own and it came out great. She then had the confidence to start cooking her own breakfast. Before she knew it, she was cooking soul food and the dishes she loved growing up.
In 2003, Alana attended Stratford University School of Culinary Arts to become a chef. Although she went to school, she never saw it as a career, it was something she would do on the side as a hobby, and she would work a “professional job” in the federal government because that is what she was taught. Chef Alana was not happy, but she was comfortable and stable. No matter what path she took in life, she just could not shake her passion for cooking. She would always get asked what she specialized in and would hesitate to answer that question because she cooked great food.
Jenn grew up in the suburbs of New York City and has lived all over the country before settling in Washington, DC. She grew her culinary chops cooking in restaurants, on private super yachts and in private homes. From the start, she was drawn to food’s ability to bring people together, and to provide comfort and nourishment. After completing a dietetic internship in Richmond, VA, Jenn returned to the DC area where she now works as a community dietitian. She also contributes to nutrition blogs, teaches cooking classes, and writes and develops recipes. Jenn is passionate about making cooking more approachable, kitchens less intimidating, and helping people make nutrition work for their lifestyle.
She stays busy being (favorite) Aunt Jenny to seven funny, clever, and beautiful nieces, and nephew. Jenn also loves all things recipes and has been known to read cookbooks cover to cover. In her spare time, she is listening to audio books, hiking, shopping for cookbooks, attempting to be a responsible pet parent, and exploring DC’s many restaurants and museums.
LaVarne Burton is President and Chief Executive Officer of the American Kidney Fund (AKF). She has led AKF since 2005, propelling the organization to many notable milestones to support the 37 million Americans living with kidney disease, with programs addressing early detection, disease management, financial assistance, clinical research, innovation and advocacy.
Ms. Burton previously 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. Before 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. She also was President of the Pharmaceutical Care Management Association (PCMA), the national trade association representing pharmacy benefit managers.
Ms. Burton received her Bachelor of Arts degree from Howard University and Master of Arts from George Washington University.
U.S. Representative Donald M. Payne, Jr. is a Democratic congressman representing New Jersey’s 10th Congressional District, which covers portions of Essex, Hudson, and Union counties. A Newark, New Jersey native, he has served the people of the 10th Congressional District since 2012. Rep. Payne, Jr. is a tireless fighter for New Jersey families, working to create jobs and grow the economy, protect and invest in our children, and ensure the health and safety of our communities.
Melissia Baker is a kidney patient and a kidney education advocate. She is currently battling kidney disease while searching for a Living Kidney Donor. Melissia has been on dialysis for the last ten years but she hasn’t let her kidney disease deter her from her dreams. During her fight with kidney disease, Melissia became a foster mother and a proud adoptive mom to her precious ten year old son. Her son is what keeps Melissia motivated to stay as healthy as possible while searching for a Living Kidney Donor Hero. Melissia advocates with AKF on the importance of kidney health and kidney-related issues. Melissia believes knowledge is power and kidney patients have the right and responsibility to understand their disease in order to receive the best possible treatment. Melissa enjoys working with AKF as a Kidney Advocate because it creates meaning and purpose in her battle with kidney disease. She is proud to be part of such as awesome team!
Rob Goldsmith is the Director of Advocacy and Policy at the Endocrine Society where he oversees legislative and regulatory issues pertaining to diabetes, obesity, and physician practice issues. He serves as liaison to the Society’s Clinical Affairs Core Committee and represents the Society as a co-chair of the Obesity Care Advocacy Network. Prior to the Endocrine Society, Rob served as Director, Federal Government Affairs at the American Diabetes Association. Rob worked on obesity issues as a congressional staffer on Capitol Hill. He developed legislation aimed at lowering childhood obesity, and also worked on the Healthy, Hunger-Free Kids Act which reauthorized federal school meal and child nutrition programs.
Rob has a B.A. in history and secondary education from Carthage College and a master’s degree in education with a focus on public policy from The University of Virginia.
Neha J. Pagidipati, MD MPH is an Associate Professor of Medicine and cardiometabolic disease prevention specialist at the Duke Clinical Research Institute. She has been involved with cardiometabolic disease prevention research since 2011. Currently, her research focuses on implementation of evidence-based care of patients with high cardiovascular disease risk and diabetes and/or obesity. Clinically, she directs the Duke Cardiometabolic Prevention Program, which focuses on behavior change and risk factor management in patients at high risk of cardiovascular and metabolic diseases.
Kristy Anderson, MPP, is the Director of Federal Government Relations at the American Heart Association and leads federal advocacy for nutrition, physical activity, wellness, and built environment. At the Association, Anderson works with federal policymakers to identify opportunities to promote cardiovascular health through measures aimed at primary prevention.
Ms. Anderson has more than twenty years of experience in public health in both the non-profit sector and on Capitol Hill. Prior to working for the American Heart Association, Anderson was the Senior Federal Policy Analyst with the Robert Wood Johnson Foundation Center to Prevent Childhood Obesity, where she worked with federal policymakers and grantees across the country to identify and promote the most promising strategies to prevent childhood obesity. Anderson spent several years as the Health Legislative Analyst at the RAND Corporation in the Office of Congressional Relations, and began her health policy career in the office of United States Senator Tom Harkin (D-IA), where she worked on health and disability issues, primarily focusing on constituent outreach and legislative duties.
Ms. Anderson received her Master of Public Policy with a concentration in Global Medical and Health Policy at the George Mason University Schar School of Policy and Government. She received a B.A. with a double major in Political Science and International Relations from Drake University in Des Moines, Iowa. Additionally, Ms. Anderson is a member of the Phi Beta Delta Honor Society, which recognizes international scholars.
Deena Adimoolam, MD is board-certified in Internal Medicine and Endocrinology. She completed her medical school at the Icahn School of Medicine at Mount Sinai and residency and fellowship training at Yale University.
Dr. Adimoolam is a public health advocate and a leader in diabetes education and prevention. She is passionate for promoting health education to minimize the health care disparities that exist throughout the community.
She serves on many advisory boards in endocrinology and diabetes. She is often called upon for her expertise in the media and works closely with local and national television channels and health magazines.
Lauren is the Associate Director of Outreach and Strategic Partnerships at the American Kidney Fund (AKF) and joined the organization in December 2021. Lauren has over nine years of experience working on health initiatives, with a focus on program and project management, outreach, and evaluation. Prior to working at AKF, Lauren worked on educational and support programs for physicians and people living with chronic illnesses. She is a public health professional who has a passion for improving the lives and well-being of people affected by chronic and infectious diseases.
Lauren has a Master of Public Health degree with a concentration in Community Health and Prevention from Drexel University and a Bachelor of Arts degree in Anthropology from Georgetown University. Currently, Lauren lives in Rockville, Maryland with her husband and two daughters.
Shayla Harris is a kidney transplant recipient, the Associate Director of Administration at the American Kidney Fund and a proud advocate for the 37-million Americans with kidney disease.
David Rush is a platinum selling recording artist formerly signed to Pitbull’s label ,Mr.305 inc. As a former in-center and now current home Hemo patient on the Tablo Dialysis machine. The one time transplant recipient David Rush truly knows what it means to live life with a Chronic Kidney disease. This point was truly proven while as a patient David took his home Hemo dialysis machine on a 40 city world tour in 2009 with multi platinum artist Pitbull as an opening act. David has been serving on the Executive Committee of the Northwestern Kidney Core Center Nu-GoKIDNEY for the past 6 years and also consulting for different major companies such as Astrazeneca and Outset Medical. David also serves on the board for kidney x and ASN board along side Dr. Susan Quaggin. In November 2022 David Rush was awarded the president s medal by ASN for his continuous advocacy work in kidney health. “WinsOnly” is David’s battle cry to know every day is a win! And to live life to the fullest.
Jessica Sheehan Tangren is an attending nephrologist in the Renal Division at Massachusetts General Hospital and an Assistant Professor of Medicine at Harvard Medical School. Her research and clinical work focus on kidney disease in pregnancy. She leads a subspecialty center at MGH focused on women s kidney health.
Ms. Laney is an assistant professor and genetic counselor at Emory University in the Division of Medical Genetics. Ms. Laney received her master’s degree in medical genetics from Sarah Lawrence College in 1999. She received her certification from the American Board of Genetic Counseling in 2002.
Since joining the Emory Division of Medical Genetics in 2002, Ms. Laney has been involved in the follow-up of abnormal metabolic newborn screening for the state of Georgia, development, and management of a genetic infusion center, and lysosomal storage disease clinical care and research.
She is currently the program leader for the Emory Lysosomal Storage disease center and the director of the Emory Genetic Clinical Trial Center. Ms. Laney teaches developmental biology and human malformation course in the Emory and Northwestern genetic counselor training programs.
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.
Noah is 15 years old and a sophomore at St. Frances Academy in Baltimore. He is a varsity wrestler who is currently ranked 25th in the state of Maryland. Noah has hopes of wrestling in college. He is a dog lover and his goal is to become a veterinarian.
Tessa is a wife and mother of four children; two of which have kidney disease. Tessa works for a non-profit that provides assistance to families caring for loved ones with behavioral and mental health challenges.
Retired from USN as a Hospital Corpsman, Retired Certified Surgical Technology, Full time Kidney Advocate. I’m a former Incenter Hemodialysis patient, Transplant recipient, Caregiver to my late husband who was a Peritoneal Dialysis patient, mother of an altruistic kidney donor and grandmother of two wonderful grandchildren.
Katie Hallum is a current junior at the University of Oklahoma studying journalism and international security. Currently, she works as a reporter and host for NPR’s affiliate KGOU as well as Gaylord News. Her current plans for after graduation are attending grad school and studying international law, with her end goal going into foreign correspondence or public diplomacy. When she’s not studying or reporting, she spends most of her time traveling with her friends.
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 Disease (ESRD) get their lives back through living kidney donor transplantation. She and her organization have helped to facilitate over two hundred kidney transplants since October 5, 2011.
LeighAnn grew up in Louisville, Kentucky and after a very difficult childhood, she learned at a very early age that if she was going to make it in this world, she had to be strong. She attended The University of Louisville where she met her husband Michael (Mike) and they 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 a part of what life dealt her. Mike broke his neck just 3 weeks after being married in a car accident and LeighAnn had to “grow up overnight.” Miraculously, he made a full recovery after six months and they went on to raise three amazing sons…
eventually traveling all over to watch their two oldest boys excel in their college football careers.
And then in 2009, Mike, at 42 years old was diagnosed with ESRD and given five to ten years to live on dialysis. This diagnosis 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 keep him off of dialysis and save his life. However, she quickly discovered that traversing through the transplant journey was extremely difficult. There was no guidance available. So LeighAnn was forced to navigate the unfamiliar path of seeking out a living donor and getting approval for transplant independently.
Ben Shlesinger is Associate Director of Government Relations for the American Kidney Fund. In this role he works with AKF’s Ambassadors to get them involved in advocacy that advances AKF’s policy priorities. Before AKF, Ben worked in advocacy for several organizations and also led political campaigns.
Tamara Y Walker, a mother of 2 adult sons, is an Advocate and Ambassador with a number of organizations in the kidney and transplant community.
Tamara was Uprooted from her hometown in Virginia (over 300 miles away) to her family’s hometown in Georgia because of the effects of hereditary Polycystic Kidney Disease and kidney failure.
Tamara shares her experiences with:
She is a Georgia Transplant Foundation PEER MENTOR, an American Kidney Fund AMBASSADOR, an American Kidney Fund KIDNEY COACH, a New Beginning Kidney Foundation EDUCATION ASSISTANT, and the Author of her first published book, MEDICAL BILL FROM HEAVEN by T.Y. Walker (discussing ADPKD and Transplant experience.)
Tamara is a graduate of Braxton School of Business
Here are Tamara’s social media handles:
FB: Tamara Y Walker, Athens, Ga
IG: T.Y. Walker TV
Twitter: T.Y. Walker @TYWalke65277180
After suffering severe kidney disease and receiving a kidney transplant, Mr. Howard has dedicated his life to helping others who face life-threatening health challenges. As Director of LifeLink of Georgia s Multicultural Donation Education Program he continues to lead collaborative efforts with local, national coalitions and community partners to spread the important message of organ donation. He serves on the boards of Donate Life America, NFLPA Former Player Board of Directors and Metro Atlanta Concerned Black Clergy. He is President of the Atlanta Chapter NFL Former Players Association and Chair of the National Multicultural Action Group. Bobby has faithfully served in the following capacities; President of the Association for Multicultural Affairs in Transplantation, President of the Georgia Transplant Foundation, a board member of the United Network of Organ Sharing and board member of the 100 Black Men of DeKalb County.
Dr. Velma Scantlebury is the first African American woman transplant surgeon in the United States. She has received many honors in her career, having been named to both the “Best Doctors in America” and “Top Doctors in America” lists multiple times.
She received her training at the University of Pittsburgh Medical Center, later relocating to the University of South Alabama (USA) as the Gulf Coast Regional Transplant Center’s Director. In 2008 she moved to Delaware to join ChristianaCare as Associate Director of the Kidney Transplant Program and Director of Outpatient Services. In 2020, Dr. Scantlebury retired from ChristiansCare to pursue an academic career and is currently a Professor of Surgery at Texas Christian University. She also serves as a surgical consultant to many other transplant industries.
Dr. Scantlebury serves on the board of National MOTTEP (Minority Organ and Tissue Transplant Educational Program) and serves on the ASTS BAR Task force.
Tanjala S. Purnell, PhD, MPH, FASN is an epidemiologist and health services researcher with over a decade of experience focused on promoting equity in kidney health, transplantation, and closely related cardiometabolic conditions. She is an Associate Professor of Epidemiology and Surgery at Johns Hopkins University, where she serves as Executive Director of the Health Freedom Path to Wellness Program; and Founding Director of the Faith-Based Alliance for Kidney Health Equity and The B.O.L.D. Health Equity Initiative.
Nationally, Dr. Purnell is a member of the Board of Directors for the National Minority Organ Tissue Transplant Education Program, a member of the Governing Board for the Living Legacy Foundation of Maryland, and a member of the National Kidney Foundation (NKF) Transplant Advisory Committee. She is the Immediate Past Chair of the American Society for Transplant Surgeons (ASTS) Diversity, Equity, and Inclusion Committee and is the inaugural recipient of the ASTS Excellence in Diversity, Equity, and Inclusion Award. Dr. Purnell is the 2023 recipient of the NKF Excellence in Transplantation Award.
Twitter: @tpurnell1908
Burgess is a highly creative and influential voice for health equity. As the Executive Director and board member of the National Minority Health Association (NMHA), he comes to the organization with vast industry experience in homecare technology, electronic visit verification (EVV), telehealth, and telecommunications. He co-founded companies such as StatChek, Inc., a pioneer in healthcare electronic visit verification (EVV), and Ankota LLC, a SaaS homecare automation firm.
A former adjunct professor of marketing at New York City College of Technology, he possesses deep marketing and public relations experience and has served in leadership roles in major corporations, as well as, partnered with PR guru, Ms. Terrie Williams at her legendary New York PR firm with clients like Eddie Murphy, Miles Davis.
A writer, panelist, and speaker on health equity on the national level, his expertise was pivotal in conceptualizing a national vaccine confidence PSA campaign, securing an $11.1M HRSA COVID-19 grant, developing Operation Healthy You™, and is a co-author of a national dementia training and certification program for caregivers. He holds an MBA from University of New Haven and a Diversity and Equity and Inclusion certificate from University of Southern Florida, recognized by Twin Cities Business Magazine as a notable Diversity, Equity, and Inclusion executive (https://tcbmag.com/notable/burgess-harrison/ ) and is a Chronic Care Professional as well as serves on the Board of Directors for Tradehome Shoes. Burgess has also shepherded the NMHA to successful support from Pfizer, AWS and their Health Equity Innovation grant and from the Chan Zuckerberg Initiative to name a few.
Dr. Anika Lucas is a nephrology fellow at Duke University. Her current research focuses on racial differences in adverse pregnancy and postpartum outcomes in women with systemic lupus erythematosus (SLE), with a goal to more accurately identify women who are at particularly high risk for adverse events. Dr. Lucas conducts studies on an international cohort of women with SLE from the United States, Canada, Germany, and Italy—one of the largest reported multi-ethnic cohorts of pregnant women with SLE in the world—and evaluates the relations between maternal second trimester estimated glomerular filtration rate (eGFR) and the likelihood of adverse pregnancy outcomes including preeclampsia, preterm birth, fetal loss, and small size for gestational age. Additionally, she explores the potential role of APOL-1 genetic mutations on these important outcomes.
Dr. Lucas is a graduate of Wellesley College, received a master’s degree from Harvard Divinity School and obtained her medical degree at Temple University School of Medicine.
She completed her residency in internal medicine at the University of Connecticut.
As part of her research fellowship, Dr. Lucas continues to receive additional training in research methods through the Clinical Research Training Program at Duke.
Dr. Richard Towne is a PharmD graduate from the University of Buffalo School of Pharmacy and Pharmaceutical Sciences. Before joining the Antidote team, he gained patient engagement experience in several settings, including primary care, managed care, hospital, and community pharmacy. He leads the annotation team at Antidote, which is responsible for structuring the I/E criteria of currently available trials on clinicaltrials.gov in order to maximize patient matching through Antidote Match.
Curtis Warfield is from Indianapolis, IN. In 2012 Curtis was diagnosed CKD. He started PD dialysis in 2014. His daughter tested to be a living donor but was not a match. Her college sorority sister wanted to be tested and was a perfect match. In January 2016, Curtis received her kidney and a new lease on life.
Curtis is passionate in advocating, educating the community, bringing awareness of kidney disease and transplantation. He does public speaking events and speaks to government officials. Curtis is a peer mentor and counselor to kidney patients. Curtis addresses health disparities in the kidney community, serves on advisory, technical expert panels, medical review panels. He serves on learning collaboratives, kidney health initiative and patient advocate platforms.
Curtis is on the Board of Directors of NKF of Indiana and Home Dialyzors United. Curtis has a degrees from Central Michigan University and Oakland City University. Curtis is married, has 4 children, and a grandson.
Dr. Carmen A. Peralta, MD, MAS, FASN is Chief Clinical Officer at Interwell Health and Volunteer Professor of Medicine at the University of California San Francisco (UCSF). She is a nephrologist, award-winning researcher, and internationally-renowned expert in the field of early detection and management of chronic kidney disease and hypertension. Dr. Peralta’s background spans both academia and the healthcare technology industry. She has won several prestigious awards including the American Heart Association Established Investigator Award as well as Fierce Healthcare’s Top 10 Most Influential Minority Healthcare Executives in 2020. She has published more than 150 research articles, and her research work has been funded by the National Institutes of Health and several foundations. Dr. Peralta is a Health Innovators Fellow at the Aspen Institute. She is passionate about building patient-focused care models that deliver improved outcomes and help patients living with kidney disease live their best lives, while reducing adverse outcomes and costs. Dr. Peralta earned her undergraduate degree at Rice University, her medical degree at The Johns Hopkins School of Medicine and completed her residency in internal medicine at the Brigham and Women’s Hospital. She completed her nephrology fellowship and earned a Master’s Degree in Clinical Research at UCSF.
Dr. John Sedor graduated from the University of Virginia School of Medicine and trained in Medicine and Nephrology at Case Western Reserve University. He remained on the CWRU faculty, and was the MetroHealth Research Endowment Professor of Medicine and Physiology and Biophysics. In 2017, Dr. Sedor moved to the Cleveland Clinic and holds the Ray W. Gifford, M.D., Endowed Chair in Kidney Research. Dr. Sedor is a recognized leader in kidney disease research and treatment. He has been continuously funded by the NIH, served on a number of NIH advisory groups and was a member of the NIDDK National Advisory Council from 2009 to 2013. From 2013 through 2019, he was Secretary-Treasurer and a Council member of the American Society of Nephrology. In 2019, he was appointed Chair of the KidneyX Innovation Accelerator Steering Committee. He won the 2010 David M. Hume Award from the National Kidney Foundation and in 2013 was elected as a Master of the American College of Physicians.
Vineeta Kumar, M.D., F.A.S.T. is a Professor of Medicine, Robert and Cutessa Bourge Endowed Professor in Transplant Nephrology, Medical Director of the Incompatible Solid Organ Transplant Program at the University of Alabama at Birmingham and lead nephrologist for the UAB Living Donor Transplant Program and Xenotransplantation efforts. Dr. Kumar is an exemplary clinician, a superb educator and is the awardee of multiple prestigious accolades to include – Cobb Rutsky Award for Clinical Excellence for ten consecutive years, 2018 Dean s Award for Excellence in Teaching, 2019 Presidential Award for Excellence in Teaching and 2017 Brewer Heslin award for professionalism and the 2022 American Nephrologists of India Origin Award for Service Excellence. She has multiple leadership positions within the American Society of Transplantation and American Society of Nephrology and is elected to the AST Board of Directors. She lectures nationally with NKF, ASN, AST, AFLDT, AREP.
Dr. Jonathan Himmelfarb is Professor of Medicine, Adjunct Professor of Bioengineering, and Co-Director of the University of Washington Center for Dialysis Innovation. He has served on expert panels for the U.S. Food and Drug Administration, Veterans Health Administration, Centers for Medicare & Medicaid Services and other organizations. Dr. Himmelfarb has served on numerous editorial boards including the Journal of the American Society of Nephrology, Clinical Journal of the American Society of Nephrology, Kidney International, BMC Medicine, Nature reviews Nephrology, the Faculty of 1000 in Medicine, and the Faculty of 1000 in Research. His research interests include developing a wearable artificial kidney and development of a human kidney-on-a-chip . Dr Himmelfarb leads investigator-initiated clinical trials and cohort studies, and multicenter collaborative studies. He is the author of over 350 peer-reviewed publications, including original research, reviews, and editorials.
LaVarne Burton is President and Chief Executive Officer of the American Kidney Fund (AKF). She has led AKF since 2005, propelling the organization to many notable milestones to support the 37 million Americans living with kidney disease, with programs addressing early detection, disease management, financial assistance, clinical research, innovation and advocacy.
Ms. Burton previously 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. Before 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. She also was President of the Pharmaceutical Care Management Association (PCMA), the national trade association representing pharmacy benefit managers.
Ms. Burton received her Bachelor of Arts degree from Howard University and Master of Arts from George Washington University.
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.
Contact us at [email protected] if you have questions or need help registering.
These live interactive workshops will bring together chefs and dietitians to prepare a renal-friendly dinner. The pairs will give step-by-step instructions on how to make the dish while answering questions from participants. (This session requires separate registration.)
OPTIONS:
Seared salmon with strawberry salsa, arugula salad, and vegetable turmeric rice recipe
Moderator: Kellsey Reed, RDN, LDN, CKD Nutrition LLC
Speaker: Alana E Hunnicutt, Klean Plate Catering LLC
Sweet and sour chicken with vegetable stir fry recipe
Moderator: Carolyn Feibig, MS, RD, LD, CCTD, Thoracic Transplant and Advanced Heart Failure Dietitian at INOVA Fairfax Hospital
Speaker: Jennifer Krasilovsky, RD, Community Dietician, Food and Friends
Plantain tofu cups recipe
Moderator: Janelle E. Gonyea, RDN, LD, FNKF, Clinical Dietician
Speaker: Sue-Ellen Anderson-Haynes, MS, RDN, CDCES, LDN, CPT, 360Girls&Women®LLC
Have you ever wanted to publicly share your journey with kidney disease, but were unsure of the next steps? Get your pen and paper ready and sign up in advance for this live workshop! You will have the opportunity to join one of three Zoom breakout rooms: sharing your story to find a living kidney donor, sharing your story for policy makers, and sharing your story to promote kidney disease awareness. In each breakout room, you will hear from seasoned instructors and learn about different methods for sharing your story and how to tailor it for different audiences. You will also be able to practice drafting your story, receive feedback from your instructor, as well as a helpful tip sheet for sharing your story. (This session requires separate registration.)
Options:
How to Share Your Story to Find a Living Donor
Speaker: Leigh Ann Saylor, Founder and Executive Director, Mulligans Living Kidney Donors
How to Share Your Story for Policy Makers
Speaker: Ben Shlesinger, Associate Director of Government Relations, American Kidney Fund
How to Share Your Story to Promote Kidney Disease Awareness
Speaker: Tamara Walker, American Kidney Fund Ambassador and Kidney Health Coach