PEPP Speakers

PEPP Speakers PEPP Speakers

If you are planning an upcoming patient or healthcare professional meeting that could benefit from having a PEPP speaker on its agenda, please contact RSN toll free at 888-296-6500 or info@RSNhope.org. Together, we can make a difference.

Aaron

Administrative Assistant, Singer
On in-center HD; formerly on CCPD
Year diagnosed with kidney disease: 2002

Aaron says that having renal failure has heightened his interest in his own health and helped him to more sharply focus on how his body feels. His main PEPP goal, he believes, is a "very important one": it is "to educate patients and family members about CKD [and] to help others realize that their life does not have to end." Aaron defines a good speaker as someone who is clear in his/her presentation, has the ability to listen to others, and is knowledgeable about the subject matter. He also wants people to realize the importance of finding ways to prevent the progression of CKD. Aaron is the co-chair of the Patient Advisory Committee (PAC) for the IPRO/ESRD Network of New York. As a singer, he continues to perform in clubs in New York City.

Bobby

Bobby Walker
Sale representative
Transplant recipient; previously on in-center HD
Year diagnosed with kidney disease: 2002

“Overall, chronic kidney disease has made my life better,” says Bobby. “My focus now is on the more positive things in life. Now I can give back the experiences I went through.” Bobby is active with all renal-related activities in his community: He is the patient representative for ESRD Network 13, works with the National Kidney Foundation of Arkansas, takes part in educational seminars held by the Division of Nephrology at the University of Arkansas for Medical Sciences, and is involved in public education with his organ procurement organization. He is eager to keep himself updated on renal disease and renal-related issues, with one of his primary goals being to help others in his situation. Says one of his supporters: “I have attended several workshops where Bobby has spoken, and he presents a frank and honest reflection of living life with chronic kidney disease and all that it encompasses. He has always managed to keep an extremely positive outlook, and this comes through in the talks he has given. The patients respect and communicate well with Bobby.”

Cher

Dental Hygienist, Speaker and Author
Transplant reciepient
Year Diagnosed with kidney disease: 1997

Cher Thomas is a dental hygienist and renal transplant recipient who has lived with kidney disease for the past 10 years. Cher is a national speaker and published author who educates and inspires patients and healthcare providers regarding the special needs of renal patients. By using both her personal and professional experience, Cher teaches audiences positive techniques that lead to improving patient/provider communication. In addition, Cher instructs patients and health care providers the key to optimal oral health during chronic kidney disease, dialysis, and after transplantation.

Christine

Former Social Worker/current Computer Major
On CAPD; formerly on in-center HD and CCPD
Year diagnosed with chronic kidney disease: 1994

Christine has a varied background as a camp counselor, an in-home intensive family preservation specialist for at-risk youth, and a residential counselor for abused youngsters. She has also worked as a team leader with AmeriCorps and has done volunteer work for the Boys and Girls Clubs and the American Red Cross. She was Co-Coordinator for Make A Difference Day, a citywide project involving 22 communities in South Carolina. Christine admits that she "came really close to hitting rock bottom" when she was diagnosed with kidney failure 13 years ago, but pulled through after receiving a lot of encouragement from her family, friends, and church members. She challenged her chronic condition to make her "a better, stronger individual." Christine wanted to be a PEPP speaker in order to connect one-on-one with kidney patients and provide them with the necessary education and support system to overcome the fear of "the unknown of their disease."

William (“Bill”)

Editorial photographer
Transplant recipient, previously on in-center HD, home HD
Year diagnosed with kidney disease: 1977

Bill was diagnosed with kidney disease when he was 18. His kidney function declined until he began home hemodialysis in 1977 when he was 35. He dialyzed for 18 years and has been a transplant recipient for the past 12 years. Bill has been employed as a data systems project leader, management analyst, and in public relations. "Healthy living is a wonderful gift," he says. "I appreciate each morning I wake up as an opportunity to learn and to be of service to others." Bill has spoken on kidney disease before the National Kidney Foundation of Utah and Idaho, the Renal Support Network, and ESRD Network 15. He says: "There are few things I enjoy more than helping other kidney patients have an active, healthy, wonderful life."

Dawn

Homemaker, Writer
Transplant recipient; previously on in-center HD
Year diagnosed with kidney disease: 1997

Dawn was introduced to the renal community when her brother was diagnosed with ESRD in 1985. She became his PD partner, and, through that experience, found employment in a dialysis unit. Dawn herself was diagnosed with ESRD in 1997 due to type I diabetes, which she has lived with for over 33 years. “Education and hope never go out of style for the patient or the professional,” says Dawn, who assists with a local class for newly diagnosed renal patients, and has spoken to various clubs, organizations, and groups around the country. To Dawn, “a good speaker is one who can get others to change their lives for the better—sometimes by making them cry, laugh, and think while offering encouragement and bringing hope all at the same time.”

Jim

Real Estate Agent, Human Resource Consultant
Transplant recipient; previously on in-center HD and home HD
Year diagnosed with kidney disease: 1998

Jim is a Vietnam War infantry veteran who has survived a life-threatening car crash and a plane that fell almost 2,000 feet, recovered, and fell again. He has seen a lot in his life, but nothing compared to kidney disease. “I believe with all my heart that more patients can win their own battles if they change their attitudes and redirect their energy to ‘getting well,’” says Jim. “I want patients to know they can do so much more for themselves than I witnessed, and for medical personnel to be better communicators and listeners to their patients. I saw far too many patients just quit.” As a Human Resource professional and Manager, Jim has spoken to people at all organizational levels. He and his wife, Joyce (his kidney donor), were featured on a Cincinnati Kidney Foundation brochure on organ donation that is found in doctor offices throughout the tri-state area. His story was featured in the June 2004 issue of Reader’s Digest and has been retold in newspapers and the Miami University of Ohio Alumni magazine. Jim speaks to organizations throughout the country on kidney disease, survival, attitude, and belief in one's self. He is on the Patient Leadership Committee of the Renal Network for Region 9-10. Jim is also a PEPP speaker and weKAN advocate for the Renal Support Network and is a member of the Ohio Board of Nursing's Advisory Group on Dialysis. Jim believes everyone has a story. His is riveting.

Karen

Retired School Administrator
Transplant recipient
Year diagnosed with kidney disease: 1969

Karen is proudly celebrating 31 years with her first transplanted kidney, a gift of life from her 19-year old sister. She admits that she was near death on in-center hemodialysis when she received her sister's kidney, which gave her a second chance at life. She finds a certain amount of fulfilling and ironic humor in the fact that she was voted the "most shy" student in her senior class, but went on to become a teacher, coach, and high school principal used to speaking to a gym full of people. Karen enjoys a very active life and urges others to take charge of their own healthcare and educate themselves so they can make the appropriate decisions about their bodies, their lives, and their futures. She has spoken about kidney disease to groups as large as 1,700 people and has recently completed the Gift of Life volunteer training program. Karen says that the best night of her life was when she spoke at the celebration of St. Mary's Hospital's 1,000th transplant. She told 75-100 doctors and nurses about her success following her transplant and thanked them for all they do for patients who need a transplant. Her goal as a PEPP speaker is to "share the fact that transplantation indeed works."

Kathe

Nonprofit Administrator
Pre-dialysis patient
Year diagnosed with kidney disease: 2004

Kathleen was diagnosed with primary hyperparathyroidism, which caused calcification of her kidneys. She is on the transplant waiting list and is still in the pre-dialysis stage of chronic kidney disease. Currently a nonprofit administrator, Kathleen has also led a busy life as an aerobics instructor, a crisis counselor, a community educator, and craft class teacher. She says that "the single best thing that my husband and I have done through this whole thing was to get involved in the Renal Support Network and attend [RSN's annual meeting] in Philadelphia. I would simply love the chance to do for other patients what the PEPP speakers have done for me. [This involves giving] an experienced voice and a unique perspective to all the nuances of this disease that only fellow patients have." Kathleen has spoken before many groups with audiences as large as 400 attendees and has appeared on radio and television. She believes the key to being a good speaker is to be informative with doses of entertainment and humor as well as to know precisely what it is the audience hopes to take away from the presentation.

Lori

Author, Talk Show Co-Host, Patient Advocate
Three-Time transplant recipient; previously on in-center HD and CAPD
Year diagnosed with kidney disease: 1968

Lori has made a real impact on kidney patients' lives. Diagnosed with renal failure at age two, she is a shining example of a kidney patient leading a complete, productive life. She is the founder/president of the Renal Support Network and Hartwell Communications and is a former editor of two nephrology journals. Lori also wrote and produced the video, "Communication Prescription for the Renal Care Professional," and is the author of Chronically Happy--Joyful Living in Spite of Chronic Illness. In 2005, she was interviewed on organ donation by BBC Radio that was heard by around 25 million listeners. A popular motivational speaker, Lori is the co-host of "Kidney Talk," a weekly radio show. Her rallying cries, "An illness is too demanding when you don't have hope," and "One Friend Can Make the Difference!" have reverberated throughout the nephrology community.

Mandy

Renal Dietitian
Two-time transplant recipient; previously on in-center HD
Year diagnosed with kidney disease: 1979

Mandy has worked as a renal dietitian since 2002, maintaining a 40-hour work week while on dialysis. She also works part-time for the Renal Support Network as a Project Coordinator. Mandy serves on the Patient & Community Services Committee for the local National Kidney Foundation chapter and was instrumental in the launch of its “Chef Kidney” cooking class. She loves to work out and spend time with her husband and pets. Mandy is now focusing on running 10K races and hopefully a marathon one day. She attributes her “rather normal life” to a strong support system of friends and family, as well as to realizing the importance of being involved in one’s own care plan. “To say the least,” says Mandy, “I love to constantly be on the go and enjoy life to it’s fullest!”

Martinlow

"Domestic engineer”
Transplant recipient, previously on CAPD, CCPD
Year diagnosed with kidney disease: 1992

"I believe patients are the most powerful motivators for both fellow patients and professionals," says Martinlow. He has been a member of patient advocacy councils, patient leadership committees, patient-to-patient programs, rehab programs, and medical review boards for 10 years. He also has taken part in health fairs at hospitals and community centers, given patient services updates at meetings and conferences, and presented in-services for the renal departments at hospitals. Martinlow believes: “To the best of their abilities, fellow patients should put their health first in order to continue with their hopes and dreams." He is the previous Executive Director of The Indiana Shakespeare Festival and The Association of Citizens with disAbilities in Indiana. Martinlow lives in Indiana with his wife, Elaine, and six children.

Mary

Team Leader
Transplant recipient; formerly on in-center HD
Year diagnosed with polycystic kidney disease (PKD): 2002

Mary was diagnosed with PKD, the number one inherited condition, and lithium toxicity during a routine physical. She admits that, when she first learned of her condition, she was angry and scared. Then "I became informed, learning whatever I could to help myself. There was a great deal of testing and years of not knowing what to expect... but I learned." She believes that replacing fear with facts is the best way to confront any challenge. Mary has worked full-time as a team leader while undergoing in-center hemodialysis for over two years. Three years after her diagnosis, she received a successful cadaveric kidney transplant and returned to work a month later. She says: "Kidney disease has shown me vulnerability and the ability to adapt to change," adding that "learning to accept my limitations has been a real eye opener." Mary wants to use her talents as a PEPP presenter to encourage and help others become informed about chronic kidney disease. She hopes to alleviate the feelings of helplessness many patients experience. Mary believes that "having a proactive, conscious, and responsible role in your own healthcare is key" to a longer, healthy life. She has started a team for the National Kidney Foundation's Kidney Walk and is a member of the Kidney Transplant/Dialysis Association.

Oliver ("Chef O")

Professional Chef, TV Show Host
Transplant recipient; formerly on in-center HD
Year diagnosed with kidney disease: 1983

"Chef O" is an award-winning professional chef with his own award-winning television cooking show. While on hemodialysis, he suffered a heart attack, and his doctor indicated he may not live much longer if he didn't get a transplant. He quickly went on the transplant list, where his wait was only a little more than two months. Since his transplant in 1985, he has "hit the ground running and [has] not stopped yet." Oliver has spoken about healthy cooking and eating and kidney disease to numerous groups both locally and nationally. In 2005, he worked for Shire Pharmaceuticals performing healthy cooking demonstrations for dialysis patients in Indiana, Michigan, and Ohio. Chef O feels he has "a lot to offer" as a PEPP speaker.

Richard

Certified Hypnotherapist, Health Coach, Speaker
Transplant recipient; formerly on in-center and home HD, CAPD, and CCPD
Year diagnosed with chronic kidney disease (CKD): 1991

Following his CKD diagnosis, Richard tried many alternative methods of treatment (including diet, acupuncture, Eastern medicine, and even a faith healer) before going on in-center hemodialysis in 1992. He has had more vascular surgeries than he can count, but trusts his kidney transplant will be his last because he takes very good care of his new body part. Richard believes that "the choices we made yesterday have brought us to today. So, the question is: what action can we take now to ensure a brighter tomorrow? People do much better in all areas of life if they feel empowered to make informed decisions. Education gives them power and eliminates the unknown, which is the biggest cause of anxiety in the CKD patient." Richard works in Hollywood, CA, and serves as President of a speakers club in Toastmasters International. He says the PEPP speaker program gives him a solid platform from which to expand his mission of helping others.

Sandra

Career specialist supervisor

On CCPD, previously on in-center HD, CAPD

Year diagnosed with kidney disease: 2000

After almost three years on PD, Sandra continues to work full time, pursues her hobbies, and spends time with family and friends. “Most people I interact with on a regular basis have no idea that I have a chronic illness because I am able to maintain a normal lifestyle,” says Sandra. Her interest in PEPP: “My philosophy is that information has no value unless it is shared. When I discovered that I had CKD, I began looking for ways to make having a chronic illness a positive experience. I feel that sharing information with others not only helps them, but also benefits me because it provides me an opportunity to learn more about the disease and available treatments.” Sandra was asked by her dialysis center to act as an advocate for PD patients and coordinated a PD support group.

Shari

Graphic Designer, Managing Editor of a patient newsletter
Current transplant recipient; previously on nocturnal home HD; in-center HD, CAPD, and CCPD, and a recipient of two other transplants
Year diagnosed with kidney disease: 1976

Shari has many years’ experience as a kidney patient, beginning HD in 1977 as a child, and enjoying a total of 19 years with two transplants. After five years on CCPD, Shari had to return to HD, at which point she trained to be a patient care technician, then self-administered her own HD treatments in-center. In 2004, she and her husband moved from New York to Oregon, where she trained to do nocturnal home HD and then received a transplant, her third. “I enjoy doing whatever I set my heart to do,” says Shari. “I don’t want anyone to feel pity for me because I’m ‘sick,’ so I stay as healthy as possible. My goal is always to work dialysis into my life, not to focus my life around dialysis.” Shari especially enjoys sharing her personal knowledge, both publicly and one-on-one, about how to excel while living with kidney disease. She has spoken on peer mentoring, exercise, and self-management, and has been a speaker at the Annual Dialysis Conference.

Sharon

Life coach

Transplant recipient, previously on in-center HD, home HD

Year diagnosed with kidney disease: 1973

Sharon went through several years as a “research subject” while on dialysis under dialysis pioneer Dr. Belding Scribner, and later as part of the clinical trials for recombinant erythropoietin. She is a member of the Speakers Bureau at the Northwest Kidney Centers—speaking at schools and to other groups about kidneys, transplants, and organ donation—and is an active participant in the Kidney Early Education Program (KEEP), for which she is the facilitator and in charge of program evaluation. “I didn’t let kidney disease stop me from doing the things I wanted, such as competitive water skiing,” says Sharon. “After my transplant, I exceeded my expectations when I was ceded fifth in my division among seven states.” Sharon is now a life coach specializing in helping those with chronic disease and has had articles published in various publications. Her logo: “Make the most of the gift of life; live life on purpose.”

Shawn

Cardio-Pulmonary Resuscitation (CPR) Instructor/Trainer
Four-time kidney transplant recipient
Year diagnosed with glomerulonephritis: 1977

Shawn is a CPR instructor/trainer for the Riverside, CA, chapter of the American Red Cross who began dialysis treatments one month after her 13th birthday. As of January 2007, she was on dialysis with the hope that an acute rejection episode of her fourth kidney transplant can be reversed. Shawn is hopeful, saying that her kidney "seems to be making a bit of a comeback." She wanted to be a PEPP speaker so she could share her knowledge and experience in order to help other chronically ill kidney patients. Shawn thinks that a good speaker should be "enthusiastic, knowledgeable, and funny." She also definitely believes that dialysis patients should be proactive in making decisions with their renal healthcare team about their treatment regimens. Shawn has spoken to a number of other patients about dialysis and transplantation.

Sherai

Non-Profit Executive Director
On CCPD; former CAPD and in-center HD patient
Year diagnosed with chronic kidney disease: 2003

Despite the usual bouts with co-morbid conditions related to end-stage renal disease, Sherai says she has "adjusted quite well," adding (remarkably) that she is "probably one of the happiest PD patients that ever existed." She does everything she used to do before her diagnosis and even traveled to Nigeria, where she met her husband. Sherai says she is extremely motivated. She is a Sunday school teacher and runs a youth center for teens. "I have found that the more I know, the stronger I become," Sherai remarked. "I believe that one of the reasons people remain so fearful about dialysis, organ donation, and life in general is that they don't know enough. Knowledge is power, especially when it comes to the functioning of your own body." As a member of the PEPP family, she wants to "make myself transparent by showing people the truth with all my vulnerabilities as well as my strengths. I would love to show others how good dialysis can look and empower patients to take control of their destinies."

Sonya

College Student
On in-center HD
Year diagnosed with chronic kidney disease: 1994

Sonya is a business administration student with an eye toward a Master's degree at Oklahoma State University. Then she plans on pursuing a law degree while re-entering the work force. She says that CKD "is not the essence of Sonya," but "has grown with me and has molded me into the person I am today... It has made me [realize] that I can still have a productive life." CKD has also empowered her to help and encourage other patients. Sonya believes it is very important that patients learn all they can about their disease and take charge of their own healthcare. She also believes that getting first-hand information from those with the same or similar experience can prepare patients for challenging situations they may not understand. Sonya adds that she wants to be a PEPP speaker in order "to motivate, encourage, and increase the knowledge about renal failure." She is a member of her local Patient Advocacy Committee.

Stephanie

Former Dancer and Current Personal Trainer
Transplant recipient; formerly on in-center HD and CAPD
Year diagnosed with kidney disease: 1987

While Stephanie laments the fact that she was forced to give up her dance career, the thing she loved the most, because of her diabetic kidney disease, her positive attitude has made her determined, as a PEPP speaker, to use her experience, "combined with the latest information and technology, to educate others and make [them] aware of the symptoms of chronic kidney disease. Making a difference in the lives of people to help them overcome their fears and concerns [for] their future is of great importance to me." Stephanie runs a support group for the National Kidney Foundation (NKF) of the Alleghenies and was instrumental in launching several other NKF support groups "on a national level." She was a patient services representative for ESRD Network 4 and is a member of the NKF Patient and Family Executive Committee. Her speaking engagements have included presentations at NKF seminaries in Chicago, IL, and Charlotte, NC, as well as at the Kidney Caucus in Washington, DC. Page urges patients to become involved in their own treatment "for their self-esteem and peace of mind."

Theresa

Legal Specialist
On in-center HD
Year diagnosed with kidney disease: 2001

Theresa was a member of her college speaker's bureau and has been a district leader for the past decade. Freeman has also been a New York state committee woman for one year and has spoken to as many as 200 people on housing and other related issues. Other speaking engagements include a kidney awareness engagement with Congressman Charles Rangel (D-NY). Theresa is a member of her local dialysis center patient caucus who believes that patients should be actively involved in their own treatment process so they can better understand and accept the necessary lifestyle changes. She wanted to be a PEPP speaker to help others become aware of kidney disease and how many people are affected by it.

Tiffany

Pharmacist

On CCPD, previously on in-center HD, CAPD, and a previous transplant recipient

Year diagnosed with kidney disease: 1991

“I refused to let dialysis make me any different,” says Tiffany. “I finished up my high school years, graduating with a perfect GPA, and went off to college in Indiana, some 700 miles from my family, just me and my peritoneal dialysis machine.” While finishing her Doctorate in Pharmacy, Tiffany received a kidney transplant. She still refuses to let dialysis limit what she does, working as a pharmacist while pursuing a Doctorate in Psychology. Tiffany is active with the local NKF chapter and has been honored for her volunteer service as the pharmacist at its dialysis camp. She was chosen to speak on behalf of all Kansas transplant recipients at a ceremony during which the Governor of Kansas signed an Organ & Tissue Donor Awareness Month proclamation. “I am patiently waiting for another kidney to become available,” says Tiffany, “but until that happens I’m not about to stop living my life to the fullest extent I possibly can.

Valerie

Consultant
On in-center HD
Year diagnosed with kidney disease: 2004

Valerie admits that, while she has had the usual difficult time adjusting to the fact that her kidneys were in total failure, she also feels her life has been blessed by the presence of some very special people who have helped her realize that "each day is a gift to be lived." As soon as her mind began to clear from merely focusing on getting better, she wanted to learn and understand everything she could about her condition. This included learning all she could about the function of her kidneys, how the dialysis process worked, and what she could do to help manage her chronic condition. "I wanted to know that I was in control, and educating myself gave me a level of accountability for my own healthcare," Valerie explained. She feels that, once she knew more than most other people about her disease, she was more easily accepted by her renal healthcare team as "a knowledgeable peer." As a PEPP speaker, she is anxious to share the truth about CKD and let others know that "life still has a great deal to offer, and so do I."