Dr. John Agar
John Agar, MD, is Conjoint Clinical Professor of Medicine at Deakin University School of Medicine and Geelong Hospital, Barwon Health in Geelong, Australia. He is the former Director of Nephrology and Chief of Service (Medicine) at Barwon Health, and continues to practice clinical medicine there. He is also Clinical Associate Professor of Medicine, University of Melbourne, has published many articles about dialysis, and was awarded the Medal of the Order of Australia in 2009 for service to renal medicine in Australia. He also runs the popular website, NocturnalDialysis.org.
Beth Witten, MSW, ACSW, LSCSW
Beth has been a renal social worker since 1978. She has worked with the MEI team since 1993 as a contributing writer, researcher, technical consultant, and community outreach expert. She served on the workgroup that developed the NKF KDOQI™ Clinical Practice Guidelines for chronic kidney disease and on a Rehabilitation Services Administration workgroup that developed a national training manual for vocational rehabilitation counselors. In 2010, Beth received the CNSW Lifetime Achievement Award. Beth writes and presents on rehabilitation, health-related quality of life, and employment and kidney disease.
Beth Witten received her MSW from the University of Kansas.
Dori Schatell, MS, Executive Director, Medical Education Institute
Dori has researched and developed evidence-based educational programs for people with kidney disease since 1989. She served on the original DOQI Anemia Work Group in 1996, coordinated four editions of the Core Curriculum for the Dialysis Technician, and has written hundreds of multimedia educational pieces for patients and professionals, published dozens of peer-reviewed articles, and launched three award-winning websites: Life Options, Kidney School, and Home Dialysis Central. She and John Agar wrote Help, I Need Dialysis! in 2012—an easy-to-read, fully referenced guide that explains the impact of each type of dialysis on a number of aspects of lifestyle. She is passionate about helping people live as well as possible with kidney disease.
Claudette is a 51 year old business owner who was diagnosed with lupus 30 years ago, and is on her second transplant. She did home HD for 1 year prior to her second transplant.
Gerry Morrison is currently the Clinical Director for the Home Hemodialysis, Peritoneal Dialysis, and Chronic Kidney Disease programs at Northwest Kidney Centers. She has worked in the nephrology field for 40 years. She is an avid proponent for Home modalities and the positive outcomes of independent care.
Mark lives in Indianapolis, IN, and is hoping that Santa will bring him a second kidney.
Lana Schmidt, MBA Marketing Consultant, has insider knowledge of dialysis—she does short daily home hemodialysis seven days a week with a NxStage System One cycler. Within the kidney community Lana has published articles, spoken at conferences and meetings, created conference flyers, lobbied on Capitol Hill for kidney legislation, and participated in CMS conference calls.
She serves on the Board of Directors for AAKP, on the Medical Review Board for ESRD Renal Network 9/10, and on the Editorial Advisory Board for Nephrology News & Issues magazine. Lana specializes in strategic planning, marketing systems, media & public relations, advertising, publications, email marketing, company image development and project management, and is always looking for new projects and partners!
Mel Hodge, and his late wife Jane, moved to Silicon Valley several years after they both graduated in engineering from Northwestern University, Jane the only woman in the engineering school. Neither could foresee that Mel would become Jane’s nocturnal dialysis caregiver exactly 50 years later. Mel was a Sloan Fellow at Stanford University Graduate School of Business, founded and led several technology companies and has advised many others. He authored one of the first books on hospital information systems and has published many articles in various technology fields, including several in nephrology journals.
William Emeny is Sue’s care partner; both emotionally and in terms of helping her with the dialysis process. He has supported her through in-clinic dialysis, peritoneal dialysis and home hemodialysis; through four peritoneal infections and one bout of sepsis. Using his many years of engineering experience, he developed the idea of using a database to track and manage her daily nutrition.
Catherine Ridings, Ph.D.
Catherine Ridings, Ph.D., is a care partner and advocate for her husband Tom. Tom started dialysis in 2013 due to kidney cancer. Together, they navigate the complex maze of doing both dialysis and cancer treatment at the same time. Tom started his dialysis in center, and moved to short daily home hemo dialysis on the NxStage machine, and then to nocturnal dialysis. Dr. Ridings is also an associate professor and director of the Business Information Systems program in the College of Business and Economics at Lehigh University in Bethlehem, PA.
Jen was a dialysis caregiver for five years, through all modalities. We began with CAPD, went to APD, Home Hemo, and finally, our favorite, Nocturnal Hemo! We loved packing everything up and taking trips, be they quicker more local trips, or long 11 day cruises, NxStage gave us the freedom to travel almost as if kidney disease didn't exist!
Dr. Teri Browne
Dr. Teri Browne is an Associate Professor at the University of South Carolina College of Social Work in Columbia, SC. She earned her MSW at the State University of New York at Buffalo and her PhD at the University of Chicago. Dr. Browne worked as a dialysis social worker for 13 years, in NY, CA and IL and was the national chairperson of the Council of Nephrology Social Work. She is the co-editor of the Handbook of Health Social Work and an international expert in nephrology social work.
Susan Emeny was diagnosed with Stage 5 ESRD in March of 2012, and started dialysis July 28, 2012. After suffering through many infections and different dialysis modalities the right prescription was found in March of 2016. Through all this time, she and her husband have been monitoring her diet with software she began developing in the spring of 2012.
Patrice Perry Fields
I was an Information Technology manager, but had to retire in 2012 due to ESRD. I've been on dialysis since November 2012, currently doing home hemo. I will be starting nocturnal home hemo training in a few weeks, and have been blogging since February 2013 at patsdialysis.blogspot.com.
Ant de Villiers
Anthony “Ant” de Villiers is 70 years young, retired and living near the coast in New Zealand. He had surgery for a brachio-cephalic fistula ( upper arm) in December, 2015 and started HHD training in May of the following year. This was followed by NHHD training in November which was not very successful as he cannot sleep with the machine running next to him. He is currently on three 6-hour sessions per week in an attempt to acclimatize to nocturnal 8 hours. Following 4 years of declining health, life has improved and returned to near-normal. He is back in the sea surfing, digging in the garden and walking in the wild with his long term partner and wife Sandy.
Lynda K. Ball, MSN, RN, CNN
Lynda has been a nephrology nurse for 29 years, and certified since 1992. She is a nationally recognized vascular access expert that has been teaching cannulation for more than 20 years, including the Buttonhole Technique. She has published more than 30 articles on vascular access, and presented lectures and workshops at major nursing, technician, and surgeon meetings both nationally and internationally. She can be reached at email@example.com.
Kamal Shah's kidney failure was a two in a million chance. In 1997, he had earned a Chemical Engineering degree, and needed vaccines for a Master's degree program in the US. But, the vaccines led to atypical hemolytic uremic syndrome (aHUS). Due to a rare gene mutation, Kamal's blood broke into tiny bits that clogged his kidneys. This problem only happens to one in 500,000 people.
Kamal, who has been blogging since 2007 at kamaldshah.com, has some thoughts about the value of the Internet to his fellow patients. "The Internet is an amazing source of information. People who are comfortable with computers and browse the Internet can learn about their options. Those who do not should ask their doctor if there are options other than what they've been told. Many doctors do not let patients know all of the options. If patients ask, they might list them out, but point out problems and goad the patients to accept what they think is best! So, I recommend that patients talk to other patients. The Internet, I would say, is the best option!"
Henning Sondergaard is a psychologist with a Master's Degree from the University of Copenhagen, specializing in health psychology. He is currently working as a counselor and teacher for the Danish Kidney Association. Dr. Sondergaard has had kidney issues his whole life related to being born with spinal bifida, which also has made him a lifelong wheelchair user. He has travelled internationally since he was very young, having split his adult years between Europe and the United States. His wife is a US citizen so he travels back and forth between the two continents—now with his NxStage cycler.
Megan R Prescott, LCSW, NSW-C
Ms. Prescott has been a Nephrology Social Worker since 2002, and currently works for the University of Colorado Hospital in the Acute and Home Dialysis Units. She has served as Chair of Publications for the National CNSW Executive Committee, as a member of the Editorial Board of the Journal of Nephrology Social Work, and is past-president of the CNSW Rocky Mountain Chapter.
Ms. Prescott has published articles in Nephrology News and Issues, The Journal of Nephrology Social Work, Renalink, and Family Focus, and has lectured nationally on topics including dialysis treatment adherence, mental illness in the dialysis environment, and enhancing quality of life for dialysis patients.
Sarah Brown is the Chief Executive Officer of WDNWPT and has been helping the Indigenous Directors to run the organisation since its inception more than a decade ago. Sarah holds a Master of Nursing, a Graduate Diploma in Aboriginal Education and a Grad Dip in Health Service Management. Prior to joining WDNWPT, she was a remote area nurse and university lecturer.
Kate Stewart is a remote dialysis nurse working for Western Desert Dialysis in the Aboriginal community of Kiwirrkurra. She runs a 2 chair unit as a sole practitioner that dialyses 4 community members on their traditional land. Kate loves working in the outback and is particularly proud to be working for a company that is committed to establishing remote dialysis units so that Aboriginal people can be home on country with their families. Kate has a passion for healthy cooking and education and is enjoying the challenge of incorporating this into dialysis life in the desert.
Oz Townsend is currently working as project officer in Kiwirrkurra. He is responsible for ensuring power and water are in good supply to the community as well as engaging local community members in work.
Oz is incredibly capable and skilled with his hands and has setup the dialysis water recycling system in Kiwirrkurra, among other projects like building a pizza oven with bricks made from termite mounds and building vege gardens from scrap materials found in the local tip. Oz and Kate moved to the desert region in September 2013 for a 6 month stint, and 1 year later have no plans of 'going home'. They are hooked.
Diagnosed with kidney failure in 2002, David Rosenbloom spent six and a half years on dialysis (three in-center and three plus on home hemodialysis with the NxStage System One), followed by a successful kidney transplant in 2008. An active blogger, speaker, and nationally known kidney patient advocate, he is on the board of directors of ESRD Network 18 of Southern California and chairs its patient advisory committees.
He is a long-time marketing communications executive with more than 35 years in managerial positions with non-profit and corporate institutions. He also ran his own custom furniture/cabinetry design and construction business until stricken with kidney failure, having been a woodworker for 19 years.
In 2009 he self-published a memoir dealing with his life as a kidney patient entitled, Becoming Me, available through Amazon.
Dr. Madhukar Misra
Dr. Madhukar Misra is Professor of Nephrology at the University of Missouri Columbia USA, President of the International Society for Hemodialysis (ISHD), and chairman of the Hemodialysis section of the Annual Dialysis Conference—the largest multidisciplinary conference of dialysis professionals in the world.
He trained in Nephrology with several pioneers in the field of dialysis. He began his training with Professor John Walls (Past President of British Renal Association) and John Feehally (Past President of the International Society of Nephrology) at Leicester General Hospital in the UK, and later trained at the Hammersmith Hospitals NHS Trust at the University of London, UK with Professor Edwina Brown.
Upon moving to the USA, he completed a Fellowship in Nephrology, training with global experts Zbylut J Twardowski and Karl D Nolph. His research interests include preservation of residual renal function on dialysis and alternative hemodialysis schedules.
Tami Ramsey, RN
Tami Ramsey is an RN, BSN who has worked in hospice since 2006. She's held positions as the Director of Professional Services and as a Hospice Administrator.
Emily is a first year Nephrology fellow at Barwon Health in Geelong, Australia. She completed her medical training at the University of Melbourne and Oxford University. She has an interest in hemodialysis volume management and acute kidney injury.
Eldonna Edwards is the author of Lost in Transplantation: Memoir of an Unconventional Organ Donor. Her story chronicles a life-changing decision to donate a kidney to an ailing stranger. She is also the subject of the film "Perfect Strangers" an award-winning documentary following one kidney patient and one potential donor in their search for a possible match.
Eldonna now mentors potential donors, is a Donate Life Ambassador, and on the advisory board for the American Living Organ Donor Fund. She is available for inspirational keynote and/or educational breakout sessions at your meeting or conference. Her debut novel is planned for publication in 2016. Follow her on Facebook or Twitter.
Dr. Mark Marshall
Dr. Marshall is currently a consultant nephrologist at Middlemore Hospital in Auckland, New Zealand and an Associate Professor in Medicine, Faculty of Medicine and Health Sciences, South Auckland Clinical School, University of Auckland. He trained as a nephrologist initially in Auckland, but furthered his education under Dr Tom Golper during his fellowship at the University of Arkansas for Medical Sciences in the late 1990s. Since returning to New Zealand, Dr Marshall has become one of the country’s foremost experts in end stage renal disease and acute kidney injury care. He has continued to develop his interest in technical innovations in nephrology, such as development of sustained low-efficiency dialysis/diafiltration for critically ill patients, and is an accomplished epidemiologist with an interest in survival by modality. He has been a key member of the Australian and New Zealand Dialysis and Transplant (ANZDATA) Registry in the past, and is still a productive collaborator. He has recently taken a role as the Director of Medical Affairs for Baxter Healthcare (Renal - Asia Pacific). He lives with his family in the heart of the beautiful city of Auckland.
Dr. Kate Rhéaume-Bleue N.D.
Kate Rhéaume-Bleue is a doctor of naturopathic medicine and author who speaks internationally on many topics related to natural medicine. A graduate and former faculty member of the Canadian College of Naturopathic Medicine, Dr. Kate is the author of the book Vitamin K2 and the Calcium Paradox: How a Little Known Vitamin Could Save Your Life (HarperCollins).
You can reach her at www.DoctorKateND.com.
Henry P. Snickelsnorter
I was born into a small conservative rural community of Scottish immigrant farmers in the Midwestern wheat-belt of Western Australia in 1951: hardy self sufficient people. My early years were spent on the family farm, somewhat isolated from the world of that time—no television, one radio station, and the Sunday paper arrived on a Tuesday. Lighting was from lamps or a 32 volt generator. I left school at age 16.
At 17 I went out into the big, wide world. I was catapulted from a place that was very happily stuck in the 50s to the modern world of the later 60s. The emerging hippie culture, Beatles, Stones, Woodstock, Mama Cass, free love... It was quite a lot for a country boy to take in.
Married at age 20, I divorced a few short years later having produced my only child, my son. I went on to manage farms, then moved into agricultural contracting and earthmoving, followed by a switch to gold mining, then road construction and transport, which has remained my main focus until the present.
I am an amateur musician, and my other interests include woodworking, sailing, fishing, motorcycles, old cars, computer programming, and Australian bush poetry.
Nancy Hewitt Spaeth, BE, RN
Nancy became ill with kidney failure in 1959, was cared for by Dr. Belding Scribner during her high school years, and began college in 1965. She started dialysis in 1966 on a Kiil dialyzer and Drake Willock machine at the Seattle Artificial Kidney Center, now the Northwest Kidney Centers (NWKC), after being chosen by the Admissions and Policy Committee (the “Life and Death Committee” in Life magazine) in 1966. Her first home dialysis was overnight from 1968 to 1972. She has been on dialysis 4 times between four successful transplants, and her degrees in Education and Nursing were attained while on dialysis. Her son, Josh, and daughter, Sarah, were born during her first transplant, donated by her brother. Nancy retired from nursing but still works for her school district as a substitute teacher or RN in the health rooms. She continues to speak internationally about her good life with kidney disease. Today, Nancy serves on NWKC’s Foundation Board, Quality and Safety Committee, and received their Clyde Shield’s Distinguished Service Award. She also is a member of the national and local ESRD Patient Advisory Boards, Learning and Action Networks, as well as the American Board of Internal Medicine’s Nephrology Board. She was Published in Oxford Journal, Nephrology, Dialysis and Transplantation Vol. 22, #1, Jan, 2007, p. 62.
Eric Weinhandl, PhD, MS
Eric Weinhandl, PhD, MS, is an epidemiologist with about 14 years of research experience in chronic kidney disease, mostly regarding dialysis and pharmaceuticals. Eric worked at the United States Renal Data System (USRDS) Coordinating Center between 2004 and 2014 and has conducted studies with Amgen, Baxter, DaVita, NxStage, Sigma Tau, and the Peer Kidney Care Initiative. Today, Eric is a consulting epidemiologist to NxStage and an adjunct assistant professor in the College of Pharmacy at the University of Minnesota. He lives in Victoria, Minnesota, with his wife, Sarah; 3 sons, Isaac, Lucas, and Maxwell; and baby due in March.
Gale Schulke, RN, CDN
I started my career in the Heart/Heart-Lung transplant unit at Stanford University Medical Center during the later Pioneer days of Dr. Norman Shumway. From there, I went on to Emergency Departments in a variety of hospitals, including Alameda County Hospital (Highland) in Oakland, CA and San Jose Medical Center in San Jose. I continued in the Operating Room at Stanford University Medical Center, where we pioneered laparoscopic surgery. I was on the team doing IV conscious sedation for minor surgical procedures and on the pain management team in the early days of physiatry medicine. I joined the Dialysis Team at Satellite in Modesto in early 2002, learned dialysis, and became a manager at Gambro in Daly City for a 32 chair incenter program, 5 hospital acute program, and a 40 patient PD program. We were just starting Home HD when DaVita acquired the clinics and I started my career in home dialysis. I was a Home Program Manager with DaVita for almost 15 years, teaching patients and staff PD and Home HD on NxStage. Currently, I manage 2 home dialysis clinics for Satellite Healthcare/WellBound in San Mateo and Daly City California. My focus is on treating patient clients with dignity and maturity so they can stop living to dialyze and start dialyzing to live. My goal for all of the patient clients in my clinics is to empower them to manage their own healthcare and develop a relationship of mutual respect and dignity with each of them. My belief is that patients know their bodies best, so together we can make their lives kidney disease more satisfactory.
I am Julie, wife to Ahmed who is currently doing dialysis treatments 5 days a week, and mother to 6 year old Elizabeth and 15 year old stepdaughter Lili. I am new to blogging, and am working on providing a blog that helps raise awareness to kidney disease and dialysis while having a peek into the life of a family dealing with dialysis! I also try to write posts that will help people on dialysis who may struggle financially or could use some pointers on how to save some money so that they have one less stress to worry about. This also helps anyone who could use some help saving money! Please visit my blog at: caregiveradventures.blogspot.com
Dave White, a kidney disease warrior since 2009, is a veteran of in-center, in-center nocturnal, and peritoneal dialysis, and received a kidney transplant in 2015. Dave is pursuing a degree in Health Systems Management at UMUC (the University of Maryland University College), and has also studied at Yale University, where he majored in Mathematical Studies. Before his kidneys failed, he was an IT manager for an international law firm. Dave speaks at National Kidney Foundation and American Kidney Fund education and awareness events, and has made regional and national television appearances as a patient advocate. Dave is honored to serve on the American Association of Kidney Patients Board of Directors, the Veterans Transplantation Association Board of Directors, and the Patient Centered Outcomes Research Institute’s Advisory Panel on Patient Engagement. He also serves as chair of the Mid-Atlantic Renal Coalition's Patient Advisory Committee, as interim Chair of the Kidney Health Initiative's Patient and Family Partnership Council, and is a patient representative on the Mid-Atlantic Renal Coalition’s Medical Review Board.
John F. Safford lives in Saratoga Springs, NY with his wife Irene. They have two children and two grandchildren. John has been involved in the Nephrology community for over 25 years and has been the VP of Marketing for TNTMoborg for more than 15 years. http://www.tntmoborg.com specializes in securing devices for home dialysis therapies and is best known for the Immobile’ family of products.
Dr. Alan Collins
Dr. Collins has over 35 years of experience in nephrology and ESRD treatment. His clinical experience and research have focused on acute and chronic care of ESRD and chronic kidney disease (CKD) patients and prospective and retrospective focused clinical studies on CKD, dialysis techniques, and associated outcomes. He has also participated in international guidelines for kidney disease care, WHO committees on chronic kidney disease, and boards of international kidney foundations. Dr. Collins served as Director of the USRDS Coordinating Center from 1999-2014 and has held leadership roles at the National Kidney Foundation (President 2 years, Scientific Advisory Board member 6 years) and with the Kidney Disease Outcomes Quality Initiative (KDOQI). He also served on the International Society of Nephrology’s Commission for the Global Advancement of Nephrology committee. Today, he is the Chief Medical Officer of NxStage Medical.
I have been a RN for 33 years, and began my nephrology career as an IC dialysis staff nurse in 2004 after my husband was diagnosed with PKD. (I have been married to my high school sweetheart for 34 years with two children and three grandchildren. My daughter and son have also been diagnosed with PKD.) I continued my dialysis career in a hospital setting, doing acute as well as chronic in house HD and PD from 2007-2010, then went on to serve as Home Hemodialysis Nurse trainer, training more than 30 patients in 3 years. Because I have always sounded like a NxStage commercial, in 2014, the natural progression of my career led me to accept a job at NxStage as a Clinical Educator in TN, MS, and AL. I recently accepted a position as field HHD educator/trainer with Satellite Wellbound.
Amy Staples and her husband James (care-partner) have wandered through this journey together. She has been on dialysis since 2002 (all but 9 months on home hemodialysis). She has survived seven episodes of sepsis and had both diseased (PKD) kidneys removed and never a transplant. They have five grown children (two soldiers) and soon to be 10 grandkids whom they are devoted to and adore. Amy loves to write, design shirts, enjoys their furbabies, gardening and birdwatching. Amy is passionate about patient advocacy in many venues.
Patrice Zyry, BSN, RN, CNN
Patrice has 35 years of experience as a Nephrology Nurse, including in-center hemodialysis and home therapies (both home hemodialysis and peritoneal dialysis), and has worked as a Clinical Specialist in the U.S. and abroad for a number of dialysis providers and manufacturers including DaVita, Belmont, Renal Ventures, Nephros, Gambro Healthcare, Raritan Bay Medical Center, Satellite Wellbound, and, most recently Satellite Healthcare, managing centers in New Jersey, Illinois, Indiana, and Tennessee. Patrice is also a Home Therapies Specialty Practice Network Leader for the ANNA Garden State Chapter #125.
Malcolm Macdonald is a 62 semi-retired consultant, artist, poet and activist. He has suffered from chronic renal failure from early childhood.
Colin was diagnosed with kidney disease in 1993, confirming FSGS around 1995. He emigrated to the United States in 1997 where he married and had two children, Liam now aged 16 and Ewen, 14. Officially, he is a Technology Architect, but luckily he still writes code. He is an unabashed geek with a love for science fiction and all things technology related. If he's not reading or listening to music, chances are he's cooking something up in the kitchen.
I have been in business in Appalachia Ohio for 25 years providing medical billing services for rural EMS squads. I was born in the SF Bay Area, raised in Kailua, Hawaii, and moved to SE Ohio 25 years ago. Since 2005 when we learned my husband had a genetic kidney issue, I have committed myself to keeping him healthy though we did not have health coverage. I am a strong believer in utilizing a holistic approach to health and this has been a huge factor in the manner we now manage his renal issues combined with HHD. As a skilled and effective patient advocate and Care Partner, I hope to be able to work with others in the HHD industry to develop a comprehensive Care Partner coaching program.
Russell (Rusty) Hamilton
Russell (Rusty) Hamilton was born in a small, rural town in the country in Australia in 1973, and started his first round of dialysis in 1995/96. He married the love of his life and his rock, Kristi, in 1999, and they have three beautiful kids, ages 18, 16, and 8. The first two, Rhylie and Lincoln, were conceived while Rusty was on dialysis, and Charlize—his little princess—was the result of IVF.
Niti Madan, M.D.
I am an Associate Professor in Division of Nephrology, Department of Medicine at University of California Davis School of Medicine. I received my medical degree from Government Medical College, Patiala, Punjab, India and completed my Internal Medicine Residency at Southern Illinois University, Springfield in 2004. Subsequently I underwent Nephrology fellowship training at University of Texas, Houston. Currently I am working as faculty at University of California Davis. I have strong clinical and research interest in hypertension, acute kidney injury, glomerulonephritis, onco-nephrology and home dialysis. I do clinical work, teach students, residents and fellows. I am the Medical Director for the Nephrology clinic and the dialysis clinic.
Maddy Warren is a consultancy director with a range of clients and business interests in healthcare, medical devices and financial services. Previously she was a vice president in Talent Development at Goldman Sachs. She has been managing her own home dialysis for 21 years since she was 14, and is a passionate patient leader, advocate and peer supporter, with the ethos that people should dialyse to live not live to dialyse. She spends her spare time jumping and competing with her formation skydiving team “Fireflies” and was the first woman on dialysis to run the London Marathon, marking her 20 year dialysis anniversary.
Mary Beth Callahan, ACSW/LCSW
Mary Beth Callahan has been a kidney social worker since 1984 in dialysis & transplant, belongs to the 27th Institute on Rehabilitation Issues, and is a previous Chair of the NKF Council of Nephrology Social Workers. Her professional interests include rehabilitation, quality of life, and end of life care. She works for Dallas Transplant Institute, a subsidiary of Dallas Nephrology Associates.
I am a dialysis nurse who said yes to a research workshop 20 years ago and have continued on that journey working in Australia (Flinders and Deakin Universities) and the US (Stanford University). Presently I live and travel between two cycling and wine meccas, South Australia and the San Francisco Bay Area (which is lucky because apart from loving kidneys I love cycling and wine). My current role of Research Director at Satellite Healthcare aims to improve the lives of people on dialysis through exercise, meditation, laughter, peer mentoring and increased patient activation. I am currently Chair of the International Society of Nephrology Nursing and Allied Health Workgroup and Co-Chair of the Global Renal Exercise Group (G-REX).
I have more than 20 years of combined experience in social work, community organizations, and nonprofit groups creating leadership development and educational programs, building partnerships, and developing community involvement strategies. Professionally, I have a BA from Duquesne University, graduating Magna Cum Laude. I have worked extensively in the Juvenile Justice Department and with non-profit youth programs that focused on reintegrating youth into the community, psychoeducational counseling, and leadership, and have an extensive volunteer history, which includes Habitat for Humanity, and several juvenile justice detention centers like the Schuman Juvenile Detention Center in Pittsburgh, PA. I am the author of How to Reach Your Teen: A Parent’s Guide, and have written more than 20 articles for research journals, including Applied Clinical Research and Research Practioner. While I am not working full time in clinical research, I am glued to my laptop, writing and learning everything I can about the human spirit, faith and spirituality. I try to live life forward, even though you can only understand it backward. My experience with kidney disease started more than 20 years ago when I was diagnosed with End Stage Renal Disease caused by Alport’s Syndrome. I take my experience with this illness and pay it forward by trying to educate others about ESRD.
Download my FREE eBook, called DISCOVER THE POWER OF MINDFULNESS MEDITATION.
Nieltje has spent most of her life as an advocate for causes varying from lowering the voting age in 1969 to violence against women in 1994, which morphed into domestic violence and child abuse advocacy until 2003. She also worked to promote teleworking in the Federal workplace until 2007. When the doctors told her to get on a transplant list or start dialysis in 2007, she responded by packing up and moving to Ecuador for 6 months. She spent the next few years traveling the world, working on her bucket list. Seven years later she started dialysis, first in-center and then home HD.
It only seems natural, at a time when Nieltje thought she would be retiring, to pick up the cause for improvements in dialysis care and the treatment of kidney disease(s). So here she is, combining her love of travel and advocacy, trying to improve the lives of dialyzers in the U.S.
Nieltje blogs at JourneyofaLifeline.com
Lisa Hall, MSSW, LICSW
Lisa Hall, MSSW, LICSW has been Patient Services Director for Northwest Renal Network (Network 16) since 2010. Prior to that, she served as Patient Services Director for Network 7. She has published in peer- reviewed journals and presents nationally on vocational rehabilitation, emergency preparedness, ethics, conflict resolution, social media, and psychosocial/spiritual impact of kidney disease. Lisa serves as leader/advisor to CNSW Executive Committee; KCER Coalition; and Journal of Nephrology Social Work.
Charles is a nocturnal home hemodialysis patient and self-described evangelist for home dialysis. He is currently working on his Juris Doctorate from the University of Missouri Kansas City School of Law. He resides in Kansas City, Missouri, with his girlfriend, Haley, and two children, Grace and Charles.
Chris McIntyre MBBS DM FRCP FRCPC
Professor of Medicine and Pediatrics
Department of Medicine
Professor of Medical Biophysics
Department of Medical Biophysics
Robert Lindsay Chair of Dialysis Research and Innovation
Schulich School of Medicine and Dentistry, University of Western Ontario
Lawson Health Research Institute
Director of The Lilibeth Caberto Kidney Clinical Research Unit (KCRU)
London Health Sciences Centre, Victoria Hospital
Dr McIntyre completed Charing Cross and Westminster Medical School, London UK, in 1990. Specializing in Nephrology, he trained as a Registrar at University College London and subsequently as Lecturer at St Barts and the Royal London Hospital. He was Professor of Nephrology at Nottingham University (UK) and Head of the Division of Graduate Entry Medicine and Medical Sciences, before relocating to Canada in 2014. He is now Professor of Medicine, Pediatrics and Medical Biophysics, and the inaugural holder of the Robert Lindsay Chair of Dialysis Research and Innovation at the University of Western Ontario. He also serves as Director of the Lilibeth Caberto Kidney Clinical Research Unit at London Health Sciences Centre, leading a team of multidisciplinary researchers focused largely on the pathophysiology of dialysis and the effects on cardiovascular, brain, liver and gastro-intestinal structure and function. These studies have increasingly focused on the adverse consequences resulting from dialysis therapy itself and the improvement in outcomes by the reduction of preventable harm. Multimodal imaging plays an important role in these studies including ultrasound, CT, PET and MRI. Dr. McIntyre has supported over a 100 young researchers in the last 15 years including principal supervision of 35 PhD level postgraduate students.
Steve, 51, is a husband, father, and grandfather. He lives in Little Sutton, a village that is a suburb of Ellesmere Port, an industrial town between the cities of Chester & Liverpool in England. He has been married to Adele for 30 years, but they’ve been an item since high school. Steve and Adele were brought up on Walney Island, Cumbria, England, which he says is worth a Google for some images. Steve was a lawyer and then a part time English teacher when he worked, but stopped working as his kidney function declined.
Kyle K. Chang was diagnosed with ESRD in 2013, started with in center hemodialysis, performed peritoneal dialysis (PD)) for 5 1/2 years on his own, and now does solo home hemodialysis (home HD) treatments post recovery from a double nephrectomy in Sept, 2018. You can often find him administering and moderating various home modality support groups, including the Home Dialysis Central Facebook (FB) Discussion Group, his own FB support and advocacy page, and his YouTube channel at all hours of the day. Kyle's professional experiences are varied and focused on large and small companies including his own companies in real estate/property management, investment, or large-scale special events. He also enjoys traveling around the world, and home dialysis modalities offer him the flexibility to do all of the things he loves.
Robbi Waller MSW, LCSW
Robbi Waller MSW, LCSW is a clinically licensed social worker. She has been employed with Fresenius Kidney Care since March of 2010. In those 9 years she has been a Clinic Social Worker and in 2012 took the Regional Lead Social Work position for the Kansas City Region. She currently covers a large geography with 60 clinics in 6 states. She has been a speaker both within and outside Fresenius training managers to be strong leaders and discussing quality of life improvement. In addition, she currently works with clinics on fluid reduction projects, treatment growth, and improving clinic culture. Robbi worked with Stephanie Johnstone-Steinberg on the Social Work Intensive research project and serves on several FMC committees. She was a team member in the completion of the social work Core Curriculum and leads monthly trainings for FKC social workers across North America. Robbi received the "Work Ethic Award" from the regional vice president in 2014. She has received the GM's Club Award for Outstanding Leadership and Performance in 2016 and 2017. She also received the "Expert Master Clock" Award in 2017.
Robbi received her Graduate degree in Social Work from the University of Oklahoma in 2004 and began working at Hillcrest Medical Center in the emergency department and pediatrics. In 2008 she received her clinical license. Robbi has been in medical social work for 15 years and enjoys focusing on quality of life improvement.
Amy Weissman-Hunt, is the Arizona Regional Lead Social Worker for Fresenius Kidney Care. She has been in the nephrology social work field for the past 25 years, 12 of these as the lead social worker. Amy currently serves on the Fresenius Kidney Care Social Work Advisory Board as the Western Group Delegate and co-chairs the Home Therapies and IT committee and is one of the co-editors for the Social Work Navigator Newsletter. Amy has played an active role in the creation of new programs within FKC related to Fluid Management, Care Partner Burnout and Home Therapies Patient Experience.
Outside of Fresenius, she serves on the Network 15 Council, The NKF of AZ Transplant Medication Coverage Steering Committee, The Southwest Nephrology Conference planning committee, and the AZ ADVICE Collaborative planning committee. Amy has been a speaker on Nephrology social work topics at conferences throughout the United States. She has also been a part of research and publications for the Fresenius Social Work Intensive Program.
Amy and her husband live in Scottsdale, AZ. She is the mother of two adult kids (Maitlin and Ethan), both are creative and artistic and not interested in either Health Care or Social Work.
Matt Daley is Senior Director of National Peritoneal Dialysis Operations for DaVita and lives in Denver, Colorado.
I am 62 years old, and have Polycystic kidney disease which is very predominant In my family on my mother's side. I worked as an ER Secretary for 20 years, and have four children who are now adults, and two grandsons My husband and I travel the country in our Motorhome with our two black labs. I love to be outdoors in nature and to hike and take long walks. I am a home hemo patient, but refuse to let dialysis run my life. I live life to the fullest and enjoy the beauty of each day!!!!
Michael has been on dialysis since December, 1993, when he was 15 years old. He had failed transplants in 1995, 1998, and 2003, none of which “really took.” In 2006, Michael began home hemodialysis with NxStage, and has used the machine successfully since then. He has been mentoring and advocating for his fellow patients since he was 18. “I like helping people and helping them see the potential for life they still have,” he says. “Even though I had to see many of my dialysis friends pass over the years, it has helped me to appreciate what I have even more. My motto is, ‘I do, for those who can’t.’”