The Home Dialyzors United Board was updated on August 1, 2018. These members represent all facets of the dialysis community and are dedicated to working tirelessly for you:
Nichole Jefferson, President
It has been Nichole Jefferson‘s personal mission to tell her story and promote awareness. She was diagnosed with end-stage renal disease (ESRD) in October 2003. At that time, not only was she unaware of what that meant; she also did not know she was a high-risk factor for developing the disease.
Nieltje Gedney, Treasurer
Nieltje Gedney spent 20 years avoiding dialysis, and then found herself in the ER a year ago, crashing, and placed on emergency hemo. After starting home hemo, she felt great!
Nieltje is no newcomer to advocacy work, just to dialysis, and is really enjoying her role as HDU’s current Treasurer and past Vice President and working on the Policy and Advocacy Committee.
Denise Eilers, MemberDenise Eilers, BSN, RN, was a care partner to her late husband for 25 years and a former Director of Nursing and Nursing Home Administrator. The last 16 years she has been the Coordinator of Health Occupations and a nursing instructor at United Township Area Career Center in East Moline, IL.
Presently, Denise is an adjunct instructor at a local junior college. She has also been a past President and Vice President of HDU for several years, and head of the Advocacy, Policy and Education committee.
HDU is always looking for dedicated people who would like to contribute their talents to our efforts to improve the dialysis community. There are currently 2 Board Positions and a number of Committee openings available. Please email us to apply.
in Memoriam: Pat Colongione
We sadly announce the October 11, 2017 death of our Treasurer Pat Colongione. Pat began her advocacy work for the home dialysis community as one of our founding Board Members, and she was a care partner for her husband Ralph, who did home hemodialysis until his death in 2010.
In Memoriam: Richard J. Berkowitz
Founder and President, Richard J. Berkowitz, died in January 2014. Rich has been a persistent voice for home dialyzors, for home modalities and for bettering the quality of life for patients. He was outspoken in his belief that every single patient deserves to live a normal life on their own terms.
The key responsibility of the Board, individually and collectively, will be to advise the current HDU Board on policy decisions that involve their specific area of expertise, on an as needed basis. Join us in welcoming these dedicated, talented professionals to the HDU Advisory Board:
Dr Kam Kalantar-Zedah has conducted research and presented numerous grand rounds and other lectures in national and international conferences on renal nutrition and dietary management, Nephrectomy (cancer, donor, etc) and solitary kidney, kidney disease outcome and epidemiology, cardiovascular risks in CKD…
Hon. Karen Thurman has a personal interest in kidney disease and treatment, including dialysis. Two members of her family suffer from Polycystic Kidney Disease (PKD).
As a Member of Congress from Florida from 1993-2003, Karen Thurman worked for many kidney issues, especially in the area of immunosuppressive drugs for kidney transplant patients. A partner in TG&C Group, LLC, Karen Thurman continues her work on behalf of kidney disease patients through her representation of the PKD Foundation.
Eric Weinhandl, Research and Education Eric is an epidemiologist, finishing his PhD in the field earlier in 2015, after having finished a master’s degree in biostatistics in 2004. His first project was a study of death rates in peritoneal dialysis and matched in-center hemodialysis patients. Since then, he has worked on many interesting projects and written papers for medical journals, including the advent of Medicare Part D, which has brought better insight into medication use among dialysis patients than ever before.
He is also an adjunct assistant professor in the College of Pharmacy at the University of Minnesota.
Ellen Griffith Cohen, Policy Ellen retired in August 2012, after 11 years as a press officer in the national office of the Centers for Medicare & Medicaid Services. Her experience with CMS has been invaluable to the HDU Policy committee, helping to write and edit comments to CMS and GAO, connect with appropriate staff at CMS, and coordinate meetings.
She is currently post-transplant, having received a living donor pre-emptive transplant.
Beth Gore, Vascular is a sought-after keynote speaker and a National Patient Advocate with a background in Training, Communications and Business.
She has a BA in Psychology, a BA in Theology, an MA in Educational Psychology and PhD in Training and Development with a minor in Statistics.
Susan Emeny Susan has a B.S. in Math from S.U.N.Y. Brockport and is working on a Masters in Computer Science from S.U.N.Y. IT. She was diagnosed with CKD 5 in March of 2012, and started dialysis July 28, 2012. After trying several different dialysis modalities, Susan found home dialysis to be the right prescription for her and began HHD in March 2016.
Throughout this time, she and her husband monitored her diet with software that she began developing in 2012. Her software program, Kidney Diet Central, helps people eat the foods they like while staying within their dietary guidelines. Along the way, they discovered that the tracking information provided by the software, allows the doctor to fine tune the dialysis prescription, which contributes to feeling even better!
In Memoriam: Celeste Castillo Lee, Education was a 34 year patient of ESRD who was convinced of the transformative power of collaborations between patients, families, staff, faculty and community stakeholders to drive research forward.
She died on February 9, 2017 and left behind an amazing legacy, pioneering the concept of patient engagement in the field of medicine and research. Her passion for advocacy has left a huge void in the dialysis community.