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About RSN's Founder Lori Hartwell

Lori Hartwell’s mission is to help people living with chronic kidney disease. Hartwell suffered kidney failure at the age of two, survived 50+ surgeries and 13 years of dialysis, and is now living with her fourth kidney transplant. Hartwell founded Renal Support Network in 1993 to instill “health, happiness, and hope” into the lives of fellow patients; she serves as President to this day and has inspired patients, family members and healthcare professionals. She has built a national network of people who she refers to as her “kidney kin” to help let them know they are not alone in this journey and help them find the tools needed to navigate this illness.

She has led patient support groups since the early nineties, produced educational podcasts, meetings, unique programs, testified on patient issues at the state and federal level, authored peer-reviewed and medical journal articles on care and policy issues, and served on the boards of industry and provider organizations as a trusted patient advocate who knows the issues. Hartwell is the author of Chronically Happy – Joyful Living in Spite of Chronic Illness, the first book written by and for a patient with kidney disease to ever reach national distribution. She has hosted the KidneyTalk Podcast since 2006 that shares inspiring and educational perspective, insight and hope to her peers.

People Lori connect with come to see kidney disease in a totally different light – that although it is difficult, it is manageable. She helps them recognize the need to take control of the course and management of their illness through storytelling. Learning from another patient’s experience and point of wisdom to live successfully and navigate care is vital for success.

She has always had a knack for thinking outside the box and her past work experience of working in the entertainment field, managing dialysis medical equipment sales, editing medical journals and consulting on patient centered programs allowed her to gain professional perspective that carries through in the life-enriching programs she has created to benefit people who have kidney disease.

Lori's Story

Lori Hartwell was put on dialysis at the age of two when her kidneys suddenly stopped working. She was the youngest person ever in California to be placed on dialysis and her doctors didn’t expect her to live. But Hartwell survived, experiencing the pioneering stages of renal replacement therapy, and has been beating the odds ever since. She was on dialysis for almost 13 years – both peritoneal dialysis and hemodialysis – and has had four kidney transplants.

Hartwell took a strong interest in her medical care from a young age and absorbed as much information as she could from nurses, nephrologists, technicians, and fellow patients. She began her career working in the entertainment industry. Creating packaging and promotion material for the studios, record companies and new products coming to market. She soon realized her heart was with the kidney community and decided to concentrate her efforts on sharing her unique perspective and ideas on what the kidney care community needed. Hope was a new concept in the early 90s.

She began her medical working career in dialysis medical technology sales, visiting more than 500 freestanding and hospital-based dialysis units in 30 states. She then transitioned to medical journal publishing and patient education consulting.

Hartwell established Renal Support Network (RSN) in 1993 to instill “health, happiness, and hope” into the lives of those affected by chronic kidney disease. She has developed the organization into a national resource offering a broad array of non-medical information and support. With RSN, Hartwell has established patient-led support groups, produced educational podcasts and programs, issued calls to action and advocacy, and developed a robust platform hosting resources for patients and their families. Hartwell produces RSN’s annual virtual Hope Week, a groundbreaking, five-day conference covering topics vital to the health and well-being of kidney patients featuring medical experts as well as the voices of patients and caregivers. Her signature event is the annual Prom for teens who have kidney disease.  She spent all her teenage years on dialysis and had two transplant that didn’t work. She was home schooled due to her many absences. She felt isolated and alone and if it wasn’t for her black poodle Pepi, she would have felt hopeless at times.

Chronically Happy – Joyful Living in Spite of Chronic Illness, is Hartwell’s personal story of deciding to take simple, logical steps to live a full life and realize one’s dreams. Published in 2002, it is the first book written by a kidney patient ever to reach national distribution.

Hartwell has drawn on her career experiences in design, media, and marketing to provide creative and enjoyable outlets for the kidney patient community, such as RSN’s Annual Essay Contest and Annual Renal Teen Prom (a tradition spanning over two decades).

Through RSN, Hartwell has produced and disseminated resources via the KidneyTalk® Blog, KidneyTalk® Magazine, KidneyTalk® Podcast, and much more. She has built strong coalitions with kidney care and professional organizations and has become a nationally recognized, trusted voice of the kidney patient community. She continually advocates for patients to legislators, in policy forums, and in professional meetings.

Career

Lori hartwell - Renal Support Network - PresidentBefore entering the renal field, Lori worked at Four Corners and Disney and learned first-hand how to create and produce point of purchasing displays and packaging for the Entertainment industry. She had a boss tell her that your work defines you and she made the decision to change careers.

Ms. Hartwell began her career in the renal field as a technical sales specialist for a developer of a hematocrit-controlled hemodialysis technology. She then accepted the position of Western Regional Sales Manager, distributors of vascular access catheters, where she oversaw company activities in seven states. These positions allowed her to visit more than 500 freestanding and hospital-based dialysis units in 30 states. As such, she was able to develop a broad-based, multi-faceted view of the U.S. renal patient population, and to witness the importance of a mutual understanding between patients and healthcare providers in the quest for quality care.

She took these experiences to the world of publishing, becoming editor of the medical journal Contemporary Dialysis & Nephrology and of the lay journal For Patients Only, and content publisher of the popular website iKidney.com. She established Hartwell Communications in 2000 to help create patient education materials.

Hartwell established Renal Support Network (RSN) in 1993 to instill “health, happiness, and hope” into the lives of those affected by chronic kidney disease. She has developed the organization into a nationwide resource of valuable non-medical information and support for kidney patients. Within RSN, Hartwell has established patient-led support groups, produced educational podcasts and programs, issued calls to action and advocacy, and developed inspirational materials for patients and their families. Hartwell produces RSN’s Hope Week, a five-day, annual virtual conference covering topics vital to the health and well-being of kidney patients featuring medical experts, healthcare providers and patients. She has also organized several inspirational programs for patients, including an annual essay contest and the Renal Teen Prom.

Hartwell won a 2001 Aegis Award for “Communication Prescription for the Renal Care Professional,” a 60-minute video that shares practical advice, creative communication concepts, and stories of hope from people who live with kidney disease and from renal care professionals. In 2002, she published her personal story in Chronically Happy – Joyful Living in Spite of Chronic Illness, the first book written by a kidney patient ever to reach national distribution.

She is known for her creativity and “thinking outside the box.”  She had the idea to produce a play called “Who Lives” and cast professional patient actors who had kidney disease. The synopsis is in the early 1960s, an anonymous committee of ordinary citizens in Seattle selected kidney disease victims from a pool for an experiment with something new: a kidney dialysis machine. If the experiment worked, a small number of people would live instead of surely die from kidney failure. But who among the pool lives? How will the committee choose? Playwright Christopher Meeks centers the action on one person, attorney Gabriel Hornstein, who desperately needs what the committee offers.

Who Lives was nominated for five Los Angeles Ovation Awards.  “Director Joe Ochman and executive producer Lori Hartwell have come up with an absolutely riveting and heart-pounding telling that succeeds on many levels.” –Jose Ruiz, ReviewPlays.com

This is just one example of the many creative ideas that Hartwell developed and implemented.

Through RSN, Hartwell has built strong coalitions with kidney care and professional organizations, has served on several industry and patient care boards, and has become a trusted voice of the kidney patient community. Her list of published articles, recognitions and awards is extensive, and she continues to speak for patients in policy forums and professional meetings in the U.S.

She is a founding member of Kidney Care Partners, Sevres on the National Quality Forum and a Patient Voice Editor for CJASN. She participates on various committees and workgroups, but her heart is with her peers and is constantly figuring out ways to engage them. It’s not uncommon for her to be chatting or typing with a one of her peers giving them suggestions on how to navigate care or a dose of hope.

Patient Advocacy

Advocacy WeKAN-advocacy-kidney-disease-Lori-Hartwell-Schiff
Senator Adam Schiff, Dr. Raffi Minasian and Lori Hartwell

Lori Hartwell’s motto is “An illness is too demanding when you don’t have hope.” She’s made it her mission to share kidney patients’ perspectives with healthcare providers, medical technology companies, and policymakers. Hartwell advocates at the state and national level, including testifying before the Joint Advisory Committee of the FDA. She has served on multiple industry and kidney care boards and is regularly invited by medical journals to contribute articles on the patient’s perspective. She has served on several Technical Expert Panels for Center for Medicare and Medicaid Services to provide the patient’s perspective. She also produces calls to action for the RSN community, encouraging patients to take an active role in advocating for policies that promote quality care and quality of life. Among the many successful programs, she’s started at Renal Support Network is Hope Week, a virtual conference that educates and empowers patients, their families, and the kidney care community on a broad range of topics. In 2018, she was named 28th Congressional District Woman of the Year by Congressman Adam Schiff. Schiff stated for the Congressional Record, “A resilient survivor of chronic kidney disease (CKD), Lori has dedicated her life to the renal field and patients with chronic illness.”

Publications

(partial list)

External Media

(recent, partial list)

Books

Chronically Happy: Joyful Living in Spite of Chronic Illness

Available in Audio Stream on this website at no charge

CHRONICALLY HAPPY by Lori Hartwell

This book is a must read whether you are living with a chronic illness or you want to help someone who is.

When doctors put two-year-old Lori Hartwell on dialysis after her kidneys mysteriously stopped working, they didn’t expect her to live. That was the first time she beat seemingly insurmountable odds to survive, and she continues to “one-up” the statistics today.

“There are millions of other Americans riding the same physical and emotional roller coaster of chronic illness. We all share common threads of emotion: anger, guilt, fear of the unknown, depression, and the mind-boggling question, ‘Why me?’ I wrote Chronically Happy to help people face these feelings and abandon the crippling mental barriers that go hand-in-hand with chronic disease.”
– Lori Hartwell

As a young patient, Ms. Hartwell encountered the pioneering stages of renal replacement therapy. She was the youngest person in the state of California ever to be placed on peritoneal dialysis. Following 12 years on dialysis (both peritoneal dialysis and hemodialysis) and three kidney transplants―the last of which took place in 1990 and continues to serve her well―Ms. Hartwell has emerged as a powerful illustration of how people with chronic illness can lead complete and productive lives.

The insightful, often humorous, and touching story of how Ms. Hartwell chose to live life rather than succumb to its obstacles is laid out in her book, Chronically Happy – Joyful Living in Spite of Chronic Illness, which chronicles her approach of taking simple, logical steps in order to realize one’s dreams. Chronically Happy represents the first book written by a person with kidney disease to reach national distribution.

Speaking Engagements

Lori Hartwell - public speaker - kidney disease- kidney disease survivorLori has traveled throughout the Unites States and Internationally giving motivational and educational keynotes, presentations and workshops to healthcare professionals, patients and the general public on how to overcome adversity, pursuing your goals, patient engagement and communication, and how to be your own advocate. Her personal speaking style of using humor and personal stories to make a point leaves audiences laughing and leaving with several points of wisdom to apply to their life and work.

Keynote speaker Lori Hartwell at the 2020 IDEAS Innovations in Dialysis Symposium. IDEAS brings together innovators of wearable, portable and implantable dialysis technologies, as well as industry professionals, bioengineers, nephrologists, government officials and more to discuss one goal: transform dialysis.

Watch the video:

Speech Topics by Audience

For Medical Professionals

Finding the Road to Better Care and Happiness
In this powerful and entertaining presentation, Lori recounts her version of “The Wizard of Oz.” She acknowledges the professionals who helped her, a chronically ill patient, find her heart, her brain, and her courage. She shares what she has learned and provides concrete, specific advice on how patients and professionals can communicate more effectively with one another.

You Make a Difference!
Lori reviews movie hits to help understand the importance of communicating effectively with people who have kidney disease.  She recognizes the healthcare heroes and pays tribute to their contribution to the renal care field.

Patient Engagement: Tips, Tricks, and Pitfalls
Everyone wants people with kidney disease to be involved in their own care and to have the best possible quality of life. But how do we make that happen? Lori shares her perspective on how to effectively engage patients in their care through communication, peer support, social media, and support groups. Learn what you can do to help your patients derive optimal outcomes and enhanced well-being.

Why I Decided to Become an Advocate and So Should You
Most people would agree that regulatory and legislative issues are important but boring. In 1968, when Lori’s kidneys failed, dialysis was in its infancy, and there was no Medicare reimbursement. Now over 450,000 people are on dialysis. Lori has lived through all of these developments and explains where we have been, where we are now, and how you can use your voice and lend your skills to help shape the future.

Becoming a Kidney Survivor: Tips to Help Your Patients Thrive
Surviving chronic kidney disease requires a team effort. Health care professionals will learn about the history of dialysis and what it has meant for survival, as well as ways to support and encourage patients who want to be more involved in their own care. Lori discusses the ways patients can share their own long-term survival techniques to motivate and encourage fellow patients.

Lessons Learned: How to Be Chronically Happy
Developing kidney disease at the age of 2 and learning to live with it have taught Lori that adversity introduces you to yourself. While it is easy to become resentful when you have a chronic illness, you cannot change the hand you were dealt—but you can learn to make the most of it. Lori reveals how she has achieved a joyful life despite coping with the many challenges kidney disease has meant for her.

Chronically Happy, Damn It!
Is the glass half-empty or half-full? Life is largely about perception. Lori says, “If I focused on everything that is wrong with me medically, I wouldn’t get out of bed in the morning.” She talks about the emotions that patients experience and explains how anger, when properly channeled, can be a great motivator. She helps professionals learn how to manage and direct that anger and sheds light on some of the darkness and depression that patients face.

The Advances of Transplantation from the Patient’s Perspective
Lori was a pioneer patient and shares her journey through four kidney transplants and the changes in the options available to patients over the years.

Patient Engagement: Reality or Annoyance
Patient engagement might be a bit more time-consuming, but it delivers unparalleled rewards. By acknowledging the importance of feedback, health care professionals can provide patients with a sense of their own importance and empower them. Lori draws on her many years as a patient to share tips on how to foster an environment that will encourage true teamwork and ensure better outcomes.

For Patients and Family Members

Why I Decided to Become an Advocate and So Should You
Most people would agree that regulatory and legislative issues are important but boring. In 1968, when Lori’s kidneys failed, dialysis was in its infancy, and there was no Medicare reimbursement. Now over 450,000 people are on dialysis. Lori has lived through all of these developments and explains where we have been, where we are now, and how you can use your voice and lend your skills to help shape the future.

Becoming a Kidney Survivor: Lessons Learned from Experience
Living with chronic kidney disease has all the elements of a really good game: it is challenging, requires a team effort, calls for strategy, and at times can be amusing. However, the truth is that surviving kidney disease is not a game. So what does it take to be a survivor? Patient speakers share their experiences, strength, and hope.

Organ Donation: Myth or Fact?
Lori talks about the importance of organ donation and transplantation and describes the pros and cons of receiving a kidney transplant. Her story will touch your heart as she explains how donors can share the gift of life and medical technology can make it possible.

How to Be Chronically Happy
Developing kidney disease at the age of 2 and learning to live with it have taught Lori that adversity introduces you to yourself. While it is easy to become resentful when you have a chronic illness, you cannot change the hand you were dealt—but you can learn to make the most of it. Lori reveals how she has achieved a joyful life despite coping with the many challenges kidney disease has meant for her.

For the General Public

Lessons Learned
Throughout her life, Lori has overcome the odds again and again. In this powerful and entertaining presentation, she shares the lessons she has learned along the way.

Do You Make a Difference?
Lori discusses her tragedies, her triumphs, and the health care heroes who motivated her and kept her from losing hope as she learned to live—and live well—with kidney disease.

Four Words That Will Change Your Life
Everyone experiences fear, and in its most extreme form, fear can paralyze you. Lori shares some of the tips and strategies she has relied on to achieve her goals in her professional and personal lives despite a severe illness and more than 45 surgeries.

Organ Donation: Myth or Fact?
In an inspiring talk on the importance of organ donation and transplantation, Lori shares the pros and cons of receiving a kidney transplant. This gift of life proves that anything is possible with today’s advanced technology, and Lori’s story will touch your heart.

Awards and Recognition

Lori Hartwell receives NASW’s Public Citizen of the Year Award.

Watch the video:

(more awards, partial list)

  • August 23, 2021, IDEAS Patient Engagement Award Spotlighting Excellence in Patient Engagement
  • October 17, 2020, NASW-CA Public Citizen of the Year
  • April 2018, Congressman Adam Schiff’s 28th Congressional District Woman of the Year
  • May 2014, Recipient of the Clyde Shields Distinguished Service Award by Northwest Kidney Center
  • 2013 American Society of Nephrology President’s Medal
  • 2013 ABWA Top Ten Candidate for 2014 Woman of the Year
  • June 2013, American Business Women of America (ABWA) Verdugo Glen-Chapter Woman of the Year
  • September 2012, “Business Life Magazine Women Achievers” honoree
  • April 2012, City of Glendale, CA, Jewel of Glendale Women of Courage honoree
  • March 31, 2011, recipient of “Heart & Excellence Award”, presented by YWCA of Glendale
  • 2009-2010 “Associate of the Year”, by American Business Women’s Association
  • May 3, 2010, recipient of National Kidney Registry “Patient Advocacy Award”
  • September 2007, received prestigious NRAA “Mark Zawinsky” award for Outstanding Leadership
  • October 2005, recipient of the “Women in Business Award,” from the California State Legislature
  • May 2005, named “Citizen of the Week” by KNX Radio, Los Angeles, CA
  • March 2005, named “Woman of the Year” in the 21st Senate District by California State Sen. Jack Scott (D-Pasadena)
  • January 2004, recipient of the “2003 Quality of Life Award,” presented by Nephrology News & Issues
  • Executive Producer, Who Lives? A Play. Nominated for 5 L.A. Ovation Awards.
    “Director Joe Ochman and executive producer Lori Hartwell have come up with an absolutely riveting and heart-pounding telling that succeeds on many levels.” –Jose Ruiz, ReviewPlays.com As Seen in @This Stage Magazine
2003 quality of life award lori hartwell
2003 Quality of Life Award | Nephrology News & Issues

 

Toastmasters | Powerful Patient Advocate
Toastmasters | Powerful Patient Advocate

Who Lives? - A Play - executive producer Lori Hartwell - Christopher Meeks

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