Authors
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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.
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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.
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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.
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Eric Weinhandl, PhD, MS
Eric Weinhandl is a senior epidemiologist at the Chronic Disease Research Group (CDRG), a division of the Hennepin Healthcare Research Institute (HHRI) in Minneapolis, Minnesota. Eric has worked continuously in chronic kidney disease research since 2004. Eric has worked at CDRG between 2004 and 2015 and again since May 2020, at NxStage Medical between 2015 and 2019, and at Fresenius Medical Care North America between 2019 and 2020 (following Fresenius’ acquisition of NxStage). During his time in the field, Eric has devoted effort to the United States Renal Data System (USRDS) Coordinating Center, studies of both home hemodialysis and peritoneal dialysis, and pharmacoepidemiologic analyses about erythropoiesis-stimulating agents and phosphate binders. Eric is also an adjunct assistant professor in the Department of Pharmaceutical Care and Health Systems 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 daughter, Abbilyn.
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Jennifer Ravert, RN
Jenn joined the MEI team as Program Director in 2022, after spending most of the previous decade as an RN specializing in home dialysis modalities in New York. She graduated from SUNY, Albany, in 2006 with a BA in fine art and art history, and enrolled in nursing school at SUNY Adirondack 2 years later. Jenn’s grandmother was on dialysis at the time, so she bought MEI’s Help! I Need Dialysis! book, read it several times, and fell in love with MEI and its mission to improve the lives of people with chronic illness. Jenn started her nursing career in acute dialysis, moved to in-center, and finally to home therapies, teaching PD and HHD on as many systems available to her. From the start, her colleagues noted her fierce advocacy for patients, dedication to quality of life, and penchant for education. She strived to treat each family as if they were part of her own, earning the affectionate nickname, “Jenn Jenn the RN.” When MEI offered her a dream job combining problem-solving, research, and passion, she hung up her stethoscope, bittersweet as it was, and followed the call.
Guest Authors
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Kathy Aebel-Groesch LCSW
Kathy Aebel-Groesch, a graduate of the Brown School of Social Work at Washington University, has been a renal social worker since 1995. She worked with in-center and home dialysis patients for more than 20 years and is currently a National Senior Manager for Social Work at DaVita. She serves on the editorial board of Nephrology News and Issues, the advisory board of the Dialysis Patient Citizens Education Center, and is a member of CNSW and Eastern Missouri and Metro East chapter.
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Corlyn Altier
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.
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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 lynda31699@msn.com.
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Paul Bennett
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).
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Shaun Boyd, LCSW
Shaun Boyd has been a social worker for 24 years. He received his Masters of Social Work at the University of North Carolina at Chapel Hill in 1997, and became a Licensed Clinical Social Worker (LCSW) in 2000. He has worked for Hospice and Community Mental Health, and he provides clinical supervision for social workers pursuing clinical licensure. Shaun lives in Black Mountain, North Carolina, with his spouse and three daughters.
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Sarah Brown
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.
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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.
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Peggy Bushey
Peggy resides in beautiful Vermont, and is currently employed at University of Vermont Medical Center, in Burlington. She has been working in the dialysis field for the past 24 years, with her most recent focus on home program development. Among her past experiences in intensive care and medical-surgical nursing, she has also served as a nurse in the Army Reserves and National Guard Nurse Corps, retiring as a Major. Peggy currently serves on the board of the Renal Healthcare Association and is an active member of the Home Dialysis Task Force and Quality Committee. Peggy has also been a core member of the CDC “Making Dialysis Safer” Coalition since its inception in 2009. Most recently, she has become a member of the Vermont Kidney Association, and she is passionate about improving the quality of life for all dialysis patients.
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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.
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Michelle Carver, BSN, RN, CNN
Michelle Carver, BSN, RN, CNN, MBA, is the Chief Nursing Officer and Senior Vice President, Nursing and Clinical Services at Fresenius Kidney Care. Michelle has more than 20 years of experience in dialysis nursing care, specifically in peritoneal and home hemodialysis training and support. She currently focuses on developing and implementing standardized processes for improving clinical outcomes for dialysis patients.
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Kyle Chang
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.
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Linda Chiavaroli
Linda Chiavaroli, an editor and occasional co-writer of Taking Chances, is married to David Rosenbloom and learned about living with kidney disease as David’s care partner. Before retiring in 2012, she was communications director for the Los Angeles County Arts Commission; a journalist writing for USA Today and the Rochester (NY) Democrat & Chronicle, among other publications; and owner of a public relations and marketing firm specializing in the performing arts. Her volunteer work includes social media for several non-profit organizations and blogging for The Huntington Library, Art Museum, and Botanical Gardens.
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Terry Clark
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!!!!
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Rachel Cluthe
I’ve been doing home hemodialysis for four years now. It offers a sense of freedom and independence. Instead of visiting a clinic several times a week, I have the ability to manage my dialysis treatment on my own terms. Setting up the dialysis machine, connecting the needles, and monitoring the process have become familiar routines. It’s empowering to have the knowledge and skills to handle my treatment with confidence.
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Yvonne Coleman
Yvonne Coleman, Playwright, Author, Poet, and scholar, recipient of the James Harris Award, is a Graduate of CUNY Lehman College (2017) with a B. A. in African/African-American Studies/Creative Writing, a member of the National Society of Collegiate Scholars, and CEO and Founder of The Freedom Initiative, a Public Speaker, and Advocate, receiving a Congressional Citation (2008) “Committee on Ways & Means, U.S. House of Representatives in Recognition of Commitment & Preservation in the Fight Against Kidney Disease, and the NYS Assembly Citation for Kidney Awareness, on home hemodialysis since 2018.
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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.
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David Crook
"I never dreamed at 25 that I would be on a state-of-the-art, life-saving, life-enriching, life-extending machine, at 75, right in my own rolling home, but I am, and it is fantastic!” A home visit with a life insurance nurse, way back in 1999, led to the discovery that I was in the early stages of CKD. I had excellent care and the disease and loss of kidney function were very slow. The slow decline of my illness provided adequate time for me to research the method and multiple benefits of HHD. My training only took 2 weeksm and my Lucy has proven to be a perfect care partner. My blog contribution will be honest, open, hopefully, humorous, and unfiltered. I wear my heart and my kidney on my sleeve. Feel free to ask me anything about life, love, and HHD. It is a great privilege to be a part of this fabulous group. Stay safe and well, everyone. "Home Hemo Lifealysis, not a burden, a new beginning.”
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Lyndsay Crowson, MSN, RN
Lyndsay Crowson, MSN, RN, is the Senior Clinical Services Initiatives Manager at Fresenius Kidney Care. Lyndsay has more than 15 years of dialysis experience. She began her dialysis career as a Patient Care Technician and progressed to a Home Therapies manager prior to her current role. Lyndsay strives to ensure care teams are equipped with standardized, up-to-date tools and best practices to provide the highest quality care for dialysis patients.
KCCS002196_v01 | © 2023 Fresenius Medical Care. All Rights Reserved.
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Matt Daley
Matt Daley is Senior Director of National Peritoneal Dialysis Operations for DaVita and lives in Denver, Colorado.
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Dr. Davidson
Dr. Davidson’s professional focus is on organ transplantation and dialysis vascular access in ESRD patients. He is past Professor of Surgery at UT Southwestern Medical Center at Dallas, TX and Medical Director of Parkland’s Vascular Access Clinic. He is also the Founder of Kidney Academy, a non-profit entity dedicated to delivering quality education to a global audience on topics related to dialysis access. Dr. Davidson’s research and experience are reflected in books, peer reviewed publications, and proceedings. He is a current or past reviewer for: Critical Care Medicine, Journal of the American Society of Nephrology, Clinical Transplantation, Kidney International, Juvenile Diabetes Foundation International, and Up To Date. He has directed postgraduate programs dedicated to transplantation and dialysis access, most notably CIDA (Controversies in Dialysis Access), now in its 17th year. He is a highly requested lecturer at congresses and symposia in the U.S. and worldwide, including team building strategies. Dr. Davidson initiated development of several clinical activities, and is a co-investigator for active NIH grant supported clinical dialysis access studies.
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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.
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Charles Dimsdale
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.
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Erich Ditschman
Learning that he had kidney disease as a teen, he and his high school sweetheart went to college, married, started building a family, and lived well for the next 20 years. At the age of 36, Erich’s kidneys shut down in a matter of months. He crashed into dialysis and later received a kidney donated to him by his wife. It failed, and over the next 20 years, Erich experienced all forms of dialysis until he found the one that allowed him and his spouse to continue living a full and productive life. Erich is a national speaker, author, advocate, and blogger on his Facebook pages, Paddling on Dialysis for Kidney health, and Black Children White Parents. His topics include kidney disease, dialysis, kidney transplant, intimacy with dialysis, coming to terms with chronic illness, getting outside, and discovering one’s best life in the face of adversity.
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Claudette Dunn
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.
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Dawn P Edwards
Dawn is the CEO of her own patient-run organization, the New York State CKD Champions. A 27-year CKD Warrior with first-hand experience of every type of dialysis and transplant, she is dedicated to improving the quality of life of people with CKD through Education, Encouragement, and Empowerment. Dawn shares her wealth of insight as a mentor and communicator and her 20+ years of advocacy and education with her fellow patients and the professionals who care for them, and serves on many board and committees both locally and nationally. Dawn believes that life is a precious gift and is determined to do as much as she can. The mother of one daughter, who works in dialysis; she loves to shop, attend concerts, and travel with her home HD machine in tow. Dawn is active in her church and community and owes it all to her care team and nocturnal home hemodialysis, which keeps her strong and healthy. There's absolutely no stopping her!
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Eldonna Edwards
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.
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Bill Emeny
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.
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Susan Emeny
Sue Emeny's personal experience as a dialysis patient, kidney transplant recipient, and her successful redefinition of the renal diet, along with her engineering skills, uniquely qualifies her to help renal diet beginners have an easier time with dialysis and enjoy meals without feeling restricted or deprived.
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Vanessa Evans
Vanessa Evans has been on dialysis for over 22 years and lives in Boston with her husband and two sons. A passionate advocate for the last 14 years, Vanessa does not let her diagnosis slow her down. She works full-time as the Sr. Manager of Advocacy and Communities for FMCNA and is a member of the Kidney Health Initiative’s Patient and Family Partnership Council. Vanessa has a master’s degree from Emerson College and a BA in Political Science from University of Massachusetts’s, Amherst. She has presented for many organizations including: NKF, PCORI, ANNA, AAKP, FDA and HHS, and is considered an expert in patient experience and engagement.
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Alan Falcioni MSN, RN, CNN
Alan began his career as a Registered Nurse in Southern California at Kaiser Permanente in 1979. He has worked in Nephrology since 1981, certified since 1988. He functioned as the Acute Hemodialysis Coordinator for 9 years then started the Peritoneal Dialysis Unit in 1990. He was the PD Coordinator at the Fontana Medical Center until 2011 when he moved to start the Ontario Medical Center PD Unit. He also functioned as the senior PD RN for the Kaiser Permanente Southern California Region. He retired in 2019 after 40 years of service. He currently works as the Renal Clinical Consultant for Anacapa Technologies in San Dimas, CA, maker of Anasept® Antimicrobial Skin and Wound Cleanser. In addition to remaining active in the Nephrology community, Alan works as a photographer (flashcubephotography.com). He and his wife of 48 years, Dani, have 4 sons and 3 grandchildren.
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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.
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Dr. William Fissell
Early studies as a physicist and engineer now inform Dr. William Fissell’s approach to health care. Based at Vanderbilt University Medical Center, he collaborates with Dr. Shuvo Roy and others to apply insights from across the sciences to create medical devices. Follow him at @fisselliv
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Nieltje Gedney
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
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Patrick O. Gee, Sr., Ph.D.
Patrick Gee has spent his life as a Community Activist, fighting systemic issues such as poverty, social and racial injustices, and promoting criminal justice and education reform. He is retired from the Virginia Department of Corrections (1988-2008) and the Virginia Department of Juvenile Justice (1993-2008), where he won several awards. In April 2013, Patrick was diagnosed with Stage 3b End-Stage Kidney Disease, and in December of that year, began Peritoneal Dialysis. On April 21, 2017, Patrick received a kidney transplant. Because of his experience, Patrick is passionate about speaking on behalf of the underserved, undervalued, and disenfranchised communities of color.
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AJ Gorklo
Adam recently moved from Florida to Delaware. He does not allow his health conditions to slow him down and he enjoys volunteering at a cat shelter, cooking, and playing video games!
Age: 42
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Paz Moscovitch Gun-Zakh
My name is Paz Moscovitch Gun-Zakh, and I am married to Max, my beloved husband and dialysis partner. I am a coach, a public speaker and an author without kidneys, “connected” to a machine for more than 31 years, alive and kicking and also not pissing, in inspiring life. For many years I’ve been doing personal and business coaching, I also have my one-women show “Connected” which reveals my extraordinary life story and my “Code Alice” that I will share with you later. I am an author, a screenwriter, a playwright, I compose inspiring lectures and podcasts for others, fulfill peoples’ dreams. I write and host my filmed radio show “The Rock n’ roll of life” on the first community radio online.
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Jane Hafner, RN, BSN
Jane Hafner, who holds a BA in Psychology and a BS in Nursing, has been a nephrology nurse for more than 45 years. She now does nephrology consulting after retiring from Veteran’s Affairs and NxStage Medical. Jane is a member of ANNA and the Health Policy representative for the Heart of America ANNA chapter.
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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.
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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.
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Lori Hartwell
Lori Hartwell dedicates her life to assisting people who are battling chronic kidney disease. Having experienced kidney failure at the young age of two, enduring over 50 surgeries and 13 years of dialysis, she Is doing well with her fourth kidney transplant. In 1993, Hartwell established the Renal Support Network with the goal of helping her peers navigate, connect and be an advocate for the best care. She serves as President to this day. Hartwell is the host of KidneyTalk and author of Chronically Happy and has successfully established a nationwide community, whom she affectionately calls her “kidney kin,” providing them with the reassurance that they are not alone in their journey and offering them the necessary tools to navigate this illness.
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Stephen Hewitt
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.
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Mel Hodge
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.
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Melody Howington
Melody Howington currently suffers from CKD, which was diagnosed in 2015. She began dialysis in 2019 and transitioned to Home HD in 2021. She is also a liver transplant recipient. When not clinging on for life, she enjoys her family, grandchildren, gardening, rescue dogs, and painting. She and her care partner, Michael, have been married for 10 years.
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Michael Howington
Michael Howington is an Atlanta native and caretaker for his wife. His wife suffers from CKD and began dialysis in January of 2019 and transitioned to At Home Hemo-dialysis in March 2020. They have adult children, three rescue dogs, and an parrot. He is a professional actor, minister, and formerly worked in the IT and Accounting industries. After staying by his wife's side, watching her health decline and nearly die, he is an advocate for Kidney Disease, Treatment innovation, and dialysis.
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Ruochu Hu
Ruochu Hu is a chronically ill/disabled writer who dabbles in creative nonfiction and poetry. Ruochu is passionate about disability justice, exploring Chinese culture, and reading oddly specific academic texts that no one else cares about. Their favorite quote to live by is, “My fate belongs to me, not the heavens.”
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Jenny Ishii
Jenny is a financial analyst, inventor, and entrepreneur. At the start of her career, she was part of a Financial Leadership Development Program where she worked in various corporate finance roles for a defense company. After graduating the program and getting her MBA from Boston University, she joined a law firm leading their pricing and project management efforts. A year later, she joined a larger law firm as the Manager of Pricing and Project Management. During this time, she became pregnant, and 4 months into the pregnancy was suddenly diagnosed with Lupus and end-stage renal disease.
Months later, she started Peritoneal Dialysis (PD). While on PD, she experienced pain from using tape to secure and resecure her catheter multiple times a day. To ease the pain, she invented and patented a catheter securement wrap for PD patients, called CathPal, which secures the PD catheter in a way that allows easy access to the catheter multiple times a day without having to remove the adhesive from your skin. It doesn't stick to the catheter, so it will not yank or pull on the catheter during removal. It also does not leave a sticky glue residue, leaving your catheter cleaner after removal. Months after obtaining the patent, she launched a company named Stonewell Industries selling CathPal. You can learn more about her invention, or view an Instructional Video of CathPal on her website at: www.stonewellindustries.com.
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Brandie Jackson
Brandie lives in Maryland with her husband, Ray, and two daughters. She works as a Realtor and enjoys downtown night life, dinner dates with friends, photography, and traveling. Brandie currently does more frequent home hemodialysis (MF HHD) on the NxStage system. Prior to MF HHD, she received peritoneal dialysis (PD) and was transplanted for 6 years.
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Craig Jacobs
My name is Craig Jacobs, I'm 35 years old and currently live in New Jersey. I have two sons, ages 9 and 12. I enjoy cooking, sports, video games, and computers, and like to go to the gym 3-4 days a week. I've been on dialysis since August 2016. I spent the first 3 & 12; years on PD and now I am on in-center hemodialysis since March of 2020.
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Helen Jennings
Helen Jennings, who lives in Cheshire, UK, was diagnosed with kidney failure at age 42, when she was a single parent to a 9 year old daughter, which was a terrible shock. After 18 months of PD and 5 years of in-center HD (during which she had several hospital stays), she chose to train for solo home HD using the Fresenius 5008 machine, and has never looked back. She is keen to know as much as she can to empower herself better.
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Rosalind Joffe
Rosalind Joffe, M.Ed, PC, is passionate about giving people who live with a chronic health condition the tools they need to thrive in the workplace. A certified coach with advanced training and credentials in mediation and the Medical Coach Institute, Rosalind founded the coaching firm, ciCoach, building on her experience in living with chronic for over 40 years. She has worked with many hundreds of individuals to improve their quality of life while living with difficult health. Co-author of Women, Work and Autoimmune Disease: Keep Working, Girlfriend!, she publishes an internationally read blog, Working With Chronic Illness, was primary investigator for research studying the effects of coaching on stay at work for people with chronic disease (published in Journal of Occupational Psychology), served on the National Kidney/Works Stakeholder’s Workgroup, served on a FSSA taskforce advising on Return to Work and worked with Maze-Masters, llc, coaching long term worker’s compensation beneficiaries. A patient advocate, Rosalind chaired Massachusetts Health Quality Partners Consumer Health Council and currently chairs its Governance Committee.
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Michael Johnson
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.’”
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Keith Jones
Keith, age 54, lives in Nebraska. He received a kidney transplant in October of 2023. Prior to his transplant, Keith received peritoneal dialysis (PD) and more frequent solo home hemodialysis (HHD).
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Mark Kahre
Mark lives in Indianapolis, IN, and is hoping that Santa will bring him a second kidney.
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Carol Keller, BA, MPA
Carol is a retired Health Care Administrator spending much of her career with the Department of Veterans Affairs. Her areas of expertise included health care access and coaching clinical and administrative process improvement teams. First diagnosed with ESRD/CKD in 1972, she received two cadaveric kidney transplants and was an in-center hemodialysis patient many times. In 1997, she began HHD with a Fresenius H machine followed by a NxStage System One machine in 2007, which she continues to use for solo nocturnal treatments. As a community volunteer she was actively involved with NKF, Camp Chimer, ESRD Network 12, AAKP and Life Options as well as a multitude of other organizations, including Junior League since 1984.
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Joseph Kessler, MSN, RN, CPDN
Joseph Kessler began his career as a nurse working in acute care of solid abdominal organ transplant patients. He developed a curiosity about peritoneal dialysis and home hemodialysis while hearing first-hand experiences from home dialysis patients. This curiosity was the catalyst to becoming a home dialysis nurse. Later Joseph was recruited into operations and clinical leadership positions that have supported many home dialysis programs throughout the country. Joseph is certified as a peritoneal dialysis nurse and has over 17 yrs experience supporting home dialysis.
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Dr. Michael Kraus
Michael Kraus, MD, FACP, is Associate Chief Medical Officer at Fresenius Kidney Care focusing on home therapies. He held a similar role with NxStage Medical Inc. before Fresenius Medical Care completed the acquisition of the company in 2019. He is the former Service Line Chief for IU Health Physicians Kidney Diseases and Clinical Chief of Nephrology at Indiana University School of Medicine.
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Rob Kruger
Rob Kruger is Director of Technology and Support for Fresenius Medical Care Renal Technologies in the US. In this role, he oversees product management for German-manufactured Aqua Dialysis Water Systems, and manages a team of installers, service technicians, and trainers for those products. Rob has over 25 years of experience in water technology at Fresenius Medical Care and has held positions ranging from Biomedical Technician to Regional Technical Operations Manager. Prior to joining the company, Rob worked in biomedical technology while serving with the South African military.
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Peter Laird, MD
Dr. Peter Laird is an internal medicine specialist with nearly 20 years of clinical practice in hospital medicine, office practice and acute care medicine. Since 2007, he has required renal replacement therapy with hemodialysis due to underlying IgA nephropathy, a progressive renal disease. He now dialyzes at home with the assistance of his wife Marilou and is an outspoken advocate for wider access to optimal dialysis strategies.
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Fred L. Hill
Fred Hill, a founder, pastor, teacher, facilitator, personal trainer, "Reset" coach and author of "Dialysis Is Not Your Life." In 2000, he was diagnosed with polycystic kidney disease (PKD). In 2012 he was placed on dialysis and in 2015 he received his kidney transplant. Since then, he has received his Dialysis Technician Certificate of Completion and Personal Trainer Level 2 Certification. He developed a low to moderate exercise program for people with Chronic Kidney Disease (CKD), Renal Replacement Therapy (RRT), and Kidney Transplant Patients to experience better health.
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Karen Liddle
Karen Liddle is 50 something year old mother of two, who's been on peritoneal dialysis for 11 years. She's the Navigator for High Risk Breast Screening in Kingston Ontario. Karen keeps busy gleefully irritating her husband Sean, and mouthing off to online trolls. Her motto is "there's ALWAYS a way to do something" and she should never be underestimated when challenged.
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Lisa Love
I am just a Texas girl full of life, loves life, traveling, cooking, and sharing my experiences. It is my hope that those experiences will help others in return. I have an awesome husband, Blake, of 30 years, two fantastic daughters, Canisha and Keerstin, and a wonderful grandson. I am grateful for all of these gifts, this is my life! And I would not take anything for my journey!
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Malcolm Macdonald
Malcolm Macdonald is a 62 semi-retired consultant, artist, poet and activist. He has suffered from chronic renal failure from early childhood.
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Colin Mackay
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.
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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.
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Bell Maddux
Bell Maddux was first diagnosed with MPGN when she was 15 years old. She went through college, got married and started her career before she became eligible for transplant. She was fortunate to receive a living donation from her father without having to be on dialysis. Then, after 10 years with her father’s kidney, Bell started in-center dialysis, and switched to home-hemodialysis in 2021. Bell is optimistically awaiting “the call” for a deceased donor kidney, and in the meantime, she stays busy with her husband raising their two children, 7 and 12. She is a Peer Mentor and Patient Advocate with the National Kidney Foundation and has an 18-year career as a digital producer for a NY advertising agency.
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James Manning
James Manning is now retired from a dual career of Army Colonel and Educator/Businessman. After 11 years of home hemodialysis, he now dialyzes at the Northwest Kidney Center’s Federal Way East Center. James has volunteered for NKC for many years, including Board positions. In his free time, James enjoys photography, writing and family genealogy.
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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.
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Philip Martin
Philip Martin is a lifelong resident of Texas who started home hemodialysis in May of 2021. He and his wife/care partner will celebrate their 50th wedding anniversary in April 2022. Both are retired nurses with wide experience in many areas of health care. Even so, home dialysis has been the most difficult, challenging thing we have ever done.
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April McGraw, RN, CNN
I am April McGraw, a nephrology nurse with 18 years of experience. My educational background includes a BSN from Chamberlain College of Nursing (2010). As a nephrology nurse, I love and am passionate about empowering people to live life to the fullest despite their chronic illnesses. I have combined my nephrology nursing background, personal experience as a dialysis patient, and a strong desire to provide solutions to the problems people living with chronic illness face. I have had to strive with lupus and end-stage renal disease (ESRD) for over 30 years, so I bring a unique perspective to people with chronic illness, and advocacy is important to me as a resident of Hampton Roads, Virginia. I am happily married to my husband Johnny, and I have two adult children and three grandchildren. Website: https://ikare-academy.thinkific.com/.
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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 Scientist
Lawson Health Research Institute
Director of The Lilibeth Caberto Kidney Clinical Research Unit (KCRU)
London Health Sciences Centre, Victoria Hospital
London, Canada
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.
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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.
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Fabio’s Mom
Fabio’s Mom is currently on Peritoneal Dialysis, which she began in January 2023. She is the proud recipient of Fabio, an unrelated living donor kidney, from one of her best friends from college, which she received in 2011. Unfortunately, around 2021, Fabio began to fail, and so his mom is looking for a new kidney to dance with. Fabio’s Mom believes in the healing power of humor and creative &itching as necessary to get through the medical and emotional challenges of chronic kidney disease. She also has two Wondercats who entertain and accompany her on her dialysis journey.
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Gerry Morrison
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.
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Linda Narucki Pham
Linda became a caregiver in 2016, when her husband became ill with multiple issues. Although he has become stronger over the years, the need for dialysis and other health concerns has made her into an advocate for the best care possible. In the path to finding the best solutions for her husband, the couple has attempted all forms of dialysis, settling on nocturnal home hemo as the best for his health and their lifestyle. Linda is always looking ahead for any roadblocks that may appear and figuring out solutions to overcome them. In her free time, she volunteers for FIRST Robotics.
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Billy Nolen
Billy Nolen joined WestJet in February 2020 as Vice President–Safety, Security & Quality. In this role which reports to the CEO, Billy has responsibility for overseeing the safety and security across WestJet, Encore and Swoop, the 14,700 fellow WestJet employees and the millions of guests who fly aboard WestJet aircraft each year. Billy brings more than 30 years of operations and corporate safety, regulatory affairs and flight operations experience to WestJet and will be joining from Qantas Airways Limited, where he served as Executive Manager, Group Safety & Health responsible for the safety performance of the Qantas Group. Billy started his career as a 767, 757 and MD-80 pilot with American Airlines and later moved into leadership roles focusing on operational and corporate safety. Billy also served as Senior Vice President-Safety, Security and Operations with Airlines for America where he collaborated with leaders across the airline industry to enhance safety performance.
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Kaye Noone
I’m Kaye Noone, 39 years old, mum to a 7 year old boy and 4 year old girl, and currently on haemodialysis three times per week in a satellite unit in the north-east of England. Also, I’m currently going through a difficult divorce and have a puppy on the way…I love a challenge!
I was diagnosed with polycystic kidney disease at an unusually young age, 13, and so struggled with kidney infections during my younger years. The doctors aimed to keep my kidneys as long as possible, so infections were treated and cysts aspirated, but when I was 29, infections had become so stubborn that I needed to have one kidney removed, in the hope that the other one would keep me going. However, my blood results worsened quickly and haemodialysis was needed. My dad was worked up straight away and after only 6 months on dialysis, I received his kidney at the Freeman Hospital in Newcastle in September 2010, with my remaining kidney removed shortly after.
This wonderful gift allowed me to have my two beautiful children and 9 years of “normality.” Unfortunately, I required emergency bowel surgery in the summer of 2019, and the transplant kidney did not cope well with the trauma, so dialysis was required again. I have now been on dialysis again for around 2 years and lead all of my own care in the unit. After 18 months using a neckline for access, I have had a fistula in my right wrist for a few months, which I have been trained to needle myself.
I am now in the process of arranging to dialyse at home; the surveyor has recently visited to plan the installation and I am awaiting a slot at the local renal unit to train for home haemo. I am so excited for the positive changes that dialysing at home will make to my lifestyle, my children, and my career, and am excited to chare the journey here with you on Home Dialysis Central.
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Susan Ostrzycki/RN
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.
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Jeff Parke
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.
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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.
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Jennifer Prince
My journey with kidney disease started way back in 1993 when I lost kidney function due to Goodpasture’s Syndrome. I am now a mom to my beautiful 10-year-old daughter, a wife, and a Respiratory Therapist at a pediatric hospital. I have been on home hemodialysis with NxStage since 2016. My dialysis helps me thrive and live a full and busy life. We love to travel, camp and hike. Life doesn’t have to be perfect to be wonderful.
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Jennifer Pritchett
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!
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Jeff Rains
Jeff Rains serves as Senior Vice President of Global Commercial and Business Operations at Fresenius Medical Care Home Therapies, overseeing the commercial strategies and operations related to home dialysis products and services on a global scale. Jeff has more than 35 years of sales and marketing experience with over 30 years in the healthcare industry, overseeing sales, service and marketing in the diagnostic imaging, microbiology/molecular diagnostics, strategic sourcing, and life science products. In 2013, he joined the team at NxStage, which merged with Fresenius Medical Care in 2019. Prior to joining NxStage, Jeff served as the Vice President of Sales, Marketing and Service for BD’s Diagnostic Business, Vice President of Sales at Fisher Scientific, Vice President and General Manager of FreeMarkets (a strategic sourcing online marketplace for industrial products), and spent 14 years in positions of increasing responsibility at GE Medical Systems. Jeff received his Bachelor of Science in Management from Purdue University.
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Liz Ramos
Lissette (Liz) Ramos-Multani. I am a 51 year old former paramedic forced into retirement, beginning my kidney journey with lupus nephritis. I am now in my sixth year on dialysis, doing home HD after the first 9 months of in-center dialysis. My journey has led me to become a patient advocate, not only for myself, but for others. Loving grandmother to a 3-year old dynamo that home HD allowed me to watch come into this world and set it on fire!
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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.
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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.
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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.
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Pedro Rivera III
Pedro Rivera started in-center HD in 2003 and switched to home HD in 2006 before getting a transplant in 2010. When that kidney failed after 3 years, he resumed home HD. “Through all of this Jacqueline Rivera, my wife, my rock, has been there relentlessly and unconditionally,” says Pedro. “She has kept me grounded, she has kept me focused on the task at hand, and that was to get back on my feet each day each time. And for that I love her unconditionally.”
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David Rosenbloom
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 a past member of the board of directors of ESRD Network 18 of Southern California, former chair of its patient advisory committees as well as Network 18 representative to the KPAC of the ESRD Forum. He is currently on the Patient Advisory Committee of the National Kidney Foundation and a member of the Steering Group, SONG-Transplant Initiative, an international research project.
David 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. Born in Rochester, NY, he has lived in Los Angeles, CA since 1983.
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Dr. Shuvo Roy
Based at the University of California, San Francisco, Dr. Shuvo Roy is a bioengineer who collaborates with others across many disciplines to help translate cutting-edge research into useful medical devices that address unmet clinical needs. He is the technical director of The Kidney Project at UCSF. Follow them @KidneyProject
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Alicja Rydzewska-Rosołowska
AJKDBlog Guest Contributor
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John Safford
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.
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Lana Schmidt
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!
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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.
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Jay R. Schuster PhD
Jay Schuster has his PhD in Psychology from the University of Southern California. He and his wife have been successful entrepreneurs for more than 50 years and have visited nearly every place in the world at least twice, Antarctica six times and Africa five times. He is now a volunteer mentor for SCORE, where he helps small companies establish themselves, giving back to those who need concrete business help to be successful entrepreneurs.
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Emily See
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.
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Kamal Shah
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!"
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Tej Singh, MD
Dr. Tej Singh is a vascular access surgeon based out of Silicon Valley. He completed his medical degree from the University of Chicago, where he was very involved in early research directed to arterial adaptation to blood flow changes after fistula creation. He completed his vascular surgical training at Stanford University, where he continued research on arterial and vein adaptation. He still has an active vascular/endovascular practice. After completing his MBA from Auburn University, Dr. Singh founded Fist Assist Devices, LLC to create novel, innovative solutions to help veins and fistulas develop for phlebotomy and renal care. The patented Fist Assist device was created by Dr. Singh to help with arm vein dilation and fistula maturation
The Fist Assist for renal care device is presently for sale on Amazon in Europe and Canada, and is available for sale in India and Australia. To learn more, please visit www.fistassistdevices.comor www.fistassisteurope.com. Fist Assist is not presently for sale in the USA.
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Renata Sledge, PhD, LCSW
Renata’s research and clinical interest focus on collaboration with people and families impacted by chronic illness to improve quality of life, promote positive family adjustment, and support shared decision-making. Renata has published and presented on a variety of topics, including music therapy in cancer care, depression and distress management with end-stage renal disease and cancer, ethics, and technology in social work practice. Renata graduated from Saint Louis University with a PhD in Medical Family Therapy and is a licensed clinical social worker.
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Susan Smith
A resident of Buck’s County, Pensylvania, in 2017 I retired my position as a Juvenile Probation Officer after 31 years. As a single mom of two sons who were grown men and on their own, I was left with the question, “Okay, now what?” I quickly found the answer, sold my house, and moved to Key West, Florida. It was in Key West that I began my PD journey. I returned home to Pennsylvania 2 years ago, where I’m in the process of testing for transplant.
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Dawn Smith Bates
I have been a care partner for my husband Jimmie, who has done home hemodialysis for the last 12 years. I am a patient advocate for NxStage, a PAC member, and a Peers in Action member. I facilitate a support group for our local dialysis center for patients and care partners, which had to switch to virtual with the pandemic, and also cofacilitate a virtual support group for care partners with an amazing group of ladies. I am very passionate about home dialysis, supporting people on this journey and helping them to have a better quality of life. I love the freedom NxStage has given us to do dialysis when and where we want and the ability to live life on our terms.
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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.
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Henning Sondergaard
Henning is a psychologist with a master’s degree from the University of Copenhagen, specializing in health psychology. He started home dialysis eight years ago on a NxStage machine. He is currently working as a counselor and teacher for the Danish Kidney Association where he also regularly writes for their magazine. He is patient editor for the Journal of Renal Care, the scientific publication for the European Dialysis and Transplant Nurses Association, EDTNA. He consults with several drug and equipment manufacturers, working mostly on scientific studies as well as at conferences, where he speaks regularly.
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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.
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Richard Stacewicz
Richard Stacewicz is a 63 year old son of Polish immigrants, born in Detroit, Michigan in 1958. He attended the University of Michigan on a full scholarship dedicated to "inner-city kids, " receiving a Bachelors degree in Psychology and Philosophy, and married Ann Goethals, whom he met at the university. Richard then attended graduate school at the University of Illinois at Chicago, completing a Ph.D. in history in 1997, and publishing his dissertation in 1998, as a book entitled Winter Soldiers: An Oral History of the Vietnam Veterans Against the War. He and his wife have lived in Chicago since 1983, and have two children; Johnny who is 28 years old and Sophia who is 24. Richard is currently on home hemodialysis for coming on 2 years.
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Amy Staples
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.
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Dodie M. Stein, LCSW
Dodie M. Stein is a Licensed Clinical Social Worker with two decades of clinical experience, primarily in specialty medical settings. She worked for many years with those with kidney and other diseases. She also worked both professionally and as a volunteer in hospice, where caregiver/family support and counseling were key objectives.
Clinical interests, experience, and expertise include working with clients with chronic medical conditions, depression and/or anxiety, grief and loss issues, crisis intervention, communication disorders, life transitions, adjustment issues, and aging concerns. She also works with those with other mental health concerns and conditions. While she enjoys working with those of all ages and their care partners, her primary focus currently is with adults. She employs various psychotherapeutic strategies to help clients, depending on client needs.
In an earlier career as an Audiologist for more than two decades working with a range of patients from infants to very elderly adults, much of her expertise and experience involved short-term counseling, crisis intervention, and grief and loss support in addition to assessment and hearing aids selection. She also taught courses and provided clinical supervision to graduate students in addition to conducting clinical research.
Ms. Stein earned an MSW degree from Indiana University and is licensed in the state of Indiana. She also holds a BS in Speech Pathology & Audiology (Syracuse University), an MA in Communication Disorders (University of Southern California), and a PhD in Audiology (The University of Iowa).
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Kate Stewart
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.
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Julie Thoman-Hose
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
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Oz Townsend
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.
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Robbi Waller MSW, LCSW
Robbi Waller, MSW, LCSW, is a clinically licensed social worker. In her 11 years with Fresenius Kidney Care, Robbi has led numerous trainings for Fresenius Kidney Care managers and social workers, participated in social work research projects, and worked to improve overall clinic operations. Since 2014, Robbi has received several awards for her outstanding leadership and performance, including the “Work Ethic” award from her regional vice president, and the “Expert Master Clock” award.
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, and has now been in medical social work for 18 years, focusing on quality-of-life improvement.
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Maddy Warren
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.
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Rabbi Judith Weintraub
Rabbi Weintraub has a background in psychology, special education, and health advocacy. In her first career, she served as an early intervention specialist, working with hearing impaired young children and their families, and as an Adjunct Associate Professor at USC's School of Education. Rabbi Weintraub has been doing kidney dialysis continuously since 1975, including more than 12 years with CAPD, and the past 20 years with nocturnal home hemodialysis. She founded and was president of the Los Angeles chapter of the American Association of Kidney Patients for more than a decade. She chaired a number of committees for AAKP National, NKF SoCal. and the Network 18 Patient Advisory Council. Rabbi Weintraub has worked with Baxter Healthcare, Fresenius NA, Renal Research Institute, and the Medical Education Institute. She produced and directed the short documentary "Life On the Bridge" relating her personal journey with dialysis. She has presented extensively to both patients and professionals across the US and has written numerous articles, the most recent published in the Clinical Journal of the American Society of Nephrology. In 2020, she earned a Masters degree in Jewish Studies and became a Certified Chaplain, followed by ordination as a Rabbi in 2023. Rabbi Weintraub lives in Los Angeles with her husband.
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Amy Weissman-Hunt
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.
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Dave White
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.
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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.