HDU’s Advisory Board — Who They Are
The key responsibility of the Board, individually and collectively, will be to advise the current HDU Board on policy decisions that involve their specific area of expertise, on an as needed basis. Join us in welcoming these dedicated, talented professionals to the HDU Advisory Board:
Dr. Kam Kalantar-Zedah
Dr. Kalantar has conducted research and presented numerous grand rounds and other lectures in national and international conferences on renal nutrition and dietary management, Nephrectomy (cancer, donor, etc) and solitary kidney, kidney disease outcome and epidemiology, cardiovascular risks in CKD, malnutrition and wasting in chronic diseases, inflammation and cachexia, diabetes and obesity, diabetic nephropathy, proteinuria and foamy urine, renal osteodystrophy and mineral disorders, sodium and potassium disarrays, anemia and iron deficiency, disparities and quality of life in CKD, CKD/ESRD patient centeredness, and acid-base disorders.
Kalantar-Zadeh has authored 3 textbooks, more than 600 papers and some 20 chapters. Dr. Kalantar is Associate Editor or a member of the editorial board of several renowned peer-reviewed journals including Nephrology Dialysis Transplantation (NDT), American Journal of Kidney Diseases (AJKD), Cardiorenal Medicine (CRM), Journal of Cachexia, Sarcopenia and Muscle (JCSM), Seminars in Dialysis, Kidney International (KI), Journal of Am Soc Nephrol (JASN), Nature Reviews Nephrol, Journal of Renal Nutrition (JReN), American Journal of Nephrology (AJN), International Urology and Nephrology (IUN), Nephron, Int. J Inflammation, Clinical Journal of American Society of Nephrology (CJASN), etc.
Hon. Karen Thurman has a personal interest in kidney disease and treatment, including dialysis. Two members of her family suffer from Polycystic Kidney Disease (PKD).
As a Member of Congress from Florida from 1993-2003, Karen Thurman worked for many kidney issues, especially in the area of immunosuppressive drugs for kidney transplant patients.
She was also a member of the board of directors of NKF for six years.
A partner in TG&C Group, LLC, Karen Thurman continues her work on behalf of kidney disease patients through her representation of the PKD Foundation.
Eric is an epidemiologist, finishing his PhD in the field earlier in 2015, after having finished a master’s degree in biostatistics in 2004. His first project was a study of death rates in peritoneal dialysis and matched in-center hemodialysis patients. Since then, he has worked on many interesting projects and written papers for medical journals, including the advent of Medicare Part D, which has brought better insight into medication useamong dialysis patients than ever before.
He is also an adjunct assistant professor in the College of Pharmacy at the University of Minnesota.
Ellen Griffith Cohen retired in August 2012, after 11 years as a press officer in the national office of the Centers for Medicare & Medicaid Services. Her experience with CMS has been invaluable to the HDU Policy committee, helping to write and edit comments to CMS and GAO, connect with appropriate staff at CMS, and coordinate meetings.
She is currently post-transplant, having received a living donor pre-emptive transplant.
Beth is a sought-after keynote speaker and a National Patient Advocate with a background in Training, Communications and Business. She has a BA in Psychology, a BA in Theology, an MA in Educational Psychology and PhD in Training and Development with a minor in Statistics. She thinks, “How can we improve the system?” She currently works as the Association for Vascular Access (AVA) Director of Outreach. Her primary role is to partner with key organizations and create collaborative partnerships in helping provide safe vascular access and venous preservation. She is also on numerous national task forces and boards centered around patient safety.
Her personal mission statement is, “Speaking for those who cannot speak for themselves.” Beth, her husband of 22 years and their 6 children (all adopted with special needs) live in Tampa, Florida. Their youngest son Manny (age 8) will be central line dependent for life. Their oldest son Jacob (age 19) was diagnosed with FSGS at age 12. It was expected he would require dialysis by age 13 and will eventually need a transplant. As of yet, he has still not progressed to requiring dialysis, but his family is already educating themselves about this world.
Susan has a B.S. in Math from S.U.N.Y. Brockport and is working on a Masters in Computer Science from S.U.N.Y. IT. She was diagnosed with CKD 5 in March of 2012, and started dialysis July 28, 2012. After trying several different dialysis modalities, Susan found home dialysis to be the right prescription for her and began HHD in March 2016.
Throughout this time, she and her husband monitored her diet with software that she began developing in 2012. Her software program, Kidney Diet Central, helps people eat the foods they like while staying within their dietary guidelines. Along the way, they discovered that the tracking information provided by the software, allows the doctor to fine tune the dialysis prescription, which contributes to feeling even better!
Celeste Castillo Lee, Education (In Memoriam)
Celeste Castillo Lee was a 34 year patient of ESRD who was convinced of the transformative power of collaborations between patients, families, staff, faculty and community stakeholders to drive research forward.
She left behind an amazing legacy, pioneering the concept of patient engagement in the field of medicine and research. Her passion for advocacy has left a huge void in the dialysis community.