Patients Make the Difference

We believe patients and their caregivers have a unique perspective on kidney disease, and they are the ones who can best inform this patient-oriented study.  Therefore, we have established an Advisory Panel as a key component of EPOCH-RRT to inform the research and provide constructive feedback.

Advisory Panel

Patient perspectives represented on the panel include:

Bill Peckham, Celeste Castillo Lee, Delma Torres (Caregiver), Fred Beksa, Lamar Ashford, Margie McCall, Nicole Bryant, Sue Lawson, Yanko Restovic and Zahraa Saab

 

Meet some of the members of our advisory panel.

      

Margie McCall

Margie McCall is a graduate of Michigan State University and is also a retired automotive litigation legal assistant. For nearly twenty years, she has been a Peer Mentor and Patient Advocate for the ESRD community. She is currently writing her second book.

 
 
 
   Nicole Bryant

Being on dialysis does has its ups and downs, but I refuse let it stop me from living. I still enjoy spending time with family, friends and my dogs, that's my therapy.

 
    Celeste Castillo Lee           

Celeste Castillo Lee made invaluable contributions to the development of this website and decision tool. Celeste lived with kidney disease for most of her life, experiencing in-center hemodialysis, peritoneal dialysis, and transplant. She worked tirelessly as a patient advisor in non-profit health organizations, governmental agencies, research projects as an advisor, peer mentor and advocate nationally, and internationally. She passed away in her home on February 9, 2017, having chosen to stop dialysis as it no longer allowed her to live life at its fullest.

 
       

 

Insights from Our Advisory Panel

“Obtaining the diagnosis from the nephrologist that I had kidney disease and would require dialysis almost immediately was truly devastating. The diagnosis would have been even more difficult if I did not know about the treatment options available to me. The "up" side, if there was one, was that I could still make the decision, health-wise, that was right for me. I felt I had control over the situation and was not completely helpless or hopeless.” -Margie

“I developed kidney failure when I was a teenager. I was diagnosed with an auto immune disease at such a young age, it was difficult to understand. My challenges were lack of knowledge and the loneliness that comes with kidney disease. I became a peer mentor because I wanted young people to know that there are others on their side. I know what it's like to feel "different" and just because I have kidney disease, it doesn't have me.” -Nicole

“At first kidney disease and dialysis became my whole life. Now thanks to a new Doc, research and education, it is only a small necessary part of my daily living. I learned there were choices and alternatives in how I could again live my life.” -Fred

“Patients that are allowed and encouraged to be a part of the decisions concerning their medical care might feel more empowered and in control in an otherwise difficult situation” -Delma


Research described on this web site was partially funded through a Patient-Centered Outcomes Research Institute (PCORI) Award (1109). The statements and views presented here are solely the responsibility of the authors and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors or Methodology Committee.