A self-described Chronic Kidney Disease Warrior, Dawn has first-hand experience of every renal replacement modality, including a kidney transplant and rejection. She is currently a nocturnal home hemodialysis patient. As a result, she has a plethora of insight into the needs of people with Chronic Kidney Disease, and always keeps in mind that patients need different things at different times in their lives.

 

Dawn is dedicated to improving the quality of life of people with kidney disease, and is also a resource to her community, sharing her story and educating people about the relationships between hypertension, diabetes and kidney disease, especially in underserved communities.

 

Skills & Proficiencies

Public speaking

Peer mentoring

Staff education

Providing patient perspective

Team building

Networking
25+ years of advocacy

30+ years of lived experience with ESRD

Experienced every treatment modality

 

Employment

Wellness Ambassador, Independently Contracted
The Rogosin Institute, New York, NY

March 2019 to present

Provide patient, provider, and community education on the benefits of home dialysis therapies, kidney transplant, organ donation awareness, kidney disease awareness, and healthy living. These objectives are achieved through public speaking, community activities, and patient/staff education events.

 

Patient Advocate, Independently Contracted

Fresenius/NxStage Medical

2015 to present

Educate patients, the provider community, and the general public on the benefits of home hemodialysis. Present locally and nationally on personal life experiences with kidney disease and the improvement in quality of life since using home therapies. These presentations are facilitated through dialysis facility lobby days, staff lunch-and-learn events, and symposiums, as well as many patient education meetings. Experience in the renal field makes me an asset to the area manager due to my numerous contacts with the professional and provider communities.

 

Community Outreach Coordinator

IPRO/ESRD Network of New York

2006 to 2010

Provided education and training to ESRD professionals, patients, family members, and other members of the renal community. Worked with Network staff to coordinate educational events such as the Network Annual Meeting and patient education meetings. Served as a specialist in partnership, collaboration, and education with entities such as the Network Coalition for Emergency Preparedness. Acted as a liaison with the ESRD patients and providers, as well as other various ESRD organizations. Assisted with staffing and activities of Patent Advisory Committee and facility patient representatives. The Network received a national recognition award for the work of its Patient Advisory Committee under my leadership.

 

Education

• St. Francis College, Brooklyn, NY 1986–1988. Secondary Education/English Major, Spanish Minor.

• St. John’s Preparatory H.S. 1982–1986. Student Council Executive Board Member all four years, Featured In Who’s Who Among American High School Students 1986.

 

Honors & Awards

• Kidney and Urology Foundation of America Bright Star Award and Scholarship Recipient, 2010

• CMS Quality Conference 2009

• IPRO ESRD Network Patient Advisory Committee Award – Recognized for recruitment and organization of NW2 PAC during my tenure as Outreach Coordinator

• New York City Council Citation, 2014

• Harlem Key to The City Recipient

• U.S. Congressional Award for Community Service

• IPRO ESRD Network of New York Kathe LeBeau Patient Advocate of the Year, 2019

 

Kidney Community Activities

• Panelist on the "Depression and Dialysis - Reviewing the PCORI-funded ASCEND Study" discussion on the National Kidney Foundation podcast

• Forum of ESRD Networks Kidney Patient Advisory Committee Co-Chairperson (KPAC) Patient committee which provides support to the ESRD Networks and the renal community to improve the quality of care for renal patients by developing educational materials, public speaking on national councils and committees, and providing the patient perspective and input to national projects and initiatives. We meet regularly with the Forum and CMS advising and bringing the patient perspective to quality initiatives.

• Home Dialyzors United (HDU) Board Of Directors Member

• Network Coordinating Center (NCC) Patient Subject Matter Expert

• IPRO End Stage Renal Disease Network Of New York Education Committee Member

• Island Peer Review Organization (IPRO) Board Of Directors Member

• AAKP Patient Ambassador

• CEO, New York State CKD Champions Self-founded organization with the mission of providing education, encouragement, and empowerment to patients with kidney disease and to the provider/stakeholder community. Upon request, our team of four officers visit dialysis facilities for Lobby Day patient education and patient education meetings. We speak at dialysis provider regional meetings, ESRD Network Educational Events, and at NCC, ANNA, NANT, CRN, CNSW, NKF, AKF, BONENT and other renal stakeholders’ meetings. We also regularly speak on a variety of patient education topics at the Brooklyn Kidney Club. We advise to help set up facility patient support groups and peer mentorships, and hold patient and provider education workshops and our annual Cultural Arts Showcase, where we feature submissions from members of the renal community, both patients and providers, of any contribution to the arts. We showcase live performances, video, and pictures, as well as poetry readings and dance, to encourage patients and foster better communication between patients and staff. Our goal Is to create partnerships with any and all renal stakeholders to bring together all members of the community to improve the care provided to kidney disease patients. In 2019, we hosted our first Kidney Disease Wellness Workshop, a symposium for patients and providers with a focus on wellness, treatment options, nutrition, mental health, and vascular access. Our presenters were physicians from the kidney community, and contact hours were offered to professionals.

 

NIH/NIDDK Affiliations

• Advisory Council Member

• HOPE HEAL Study Patient Advisor

• HOPE Recruitment Committee Member

• Health Disparities/Health Equity Workgroup

• Heal Community Partner Committee

 

Publication

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D. Edwards, K. Kalantar-Zadeh, K. Norris, D. Molony, et al. Practicing health equity in involuntary discharges to overcome disparities in dialysis and kidney patient care. Current Opinion in Nephrology and Hypertension. 2022;31(). (December 2022)

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D. Edwards. Life participation: When there is more to life than dialysis. Peritoneal Dialysis International. 2022;42(6):552-553. (November 2022) 

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Dawn P. Edwards and Karine Manera. Peritoneal Dialysis International: Journal of the International Society for Peritoneal Dialysis  Volume 42, Issue 6  https://doi.org/10.1177/089686082211346   published online November 7, 2022 by Sage Journals: "Life participation: When there is more to life than dialysis"

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Derek Forfang, Dawn P. Edwards, Kamyar Kalantar-Zadeh. The Quality of Life Impact of Phosphorus Management Today: Patient Perspectives. Kidney Medicine 2022, 100437. ISSN 2590-0595.

https://doi.org/10.1016/j.xkme.2022.100437

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Cukor D, Edwards DP; New York Academy of Medicine’s 2020 Alison Norris Symposium. Personal Experiences of Patients in the Interaction of Culture and Kidney Disease. Clin J Am Soc Nephrol. 2021 May 8;16(5):818-819. doi: 10.2215/CJN.12400720. Epub 2021 Jan 13. PMID: 33441468; PMCID: PMC8259487.

Professional Training

• Kidney School Certificate Of Completion

• Certified IPRO/ESRD Network of New York Peer Mentor

 

Community Service

• Bethany Baptist Church Member

• Church Administrator and New Members Class Instructor

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Patient Advocate / Wellness Ambassador

Phone: 917-374-0608

dawnpedwards@gmail.com