Helen Robinson-Settee
Helen Robinson-SetteeCo-Chair, Indigenous Peoples' Engagement and Research Council

I was born and raised in Winnipeg, which is where I call home. I am an Anishinaabe woman with family and community connections to Dauphin River First Nation, which is located in the Interlake region of Manitoba about four hours northeast of Winnipeg. I was not raised in my home community; however, I do have connections to Chief and Council and all my relations in Dauphin River.

I am an educator. I graduated from the University of Manitoba with a Bachelor’s degree in Education (1987) and a Master’s degree in Education (2014). My expertise is in inner city education and Indigenous education. I have spent my career working in inner city schools in Winnipeg, working for the Department of Education as a consultant and later as Director of Indigenous Education, a position that I have held since 2006.

I am a wife and mother of two sons, Craig and Kevin. My son Kevin has lived with kidney disease since he was 10 years old. He was diagnosed with nephrotic syndrome and has been under the care of nephrologists since he was 11 years old. He has had various interventions until his kidneys failed in June 2010. He required a kidney transplant and used peritoneal dialysis in the interim until his kidney transplant in October 2012. His older brother Craig donated a kidney.

I am pleased to be involved with Can-SOLVE CKD, as I have been a patient supporter for Kevin since he was diagnosed with CKD as a child and living with the disease until his kidney transplant. I was introduced to Can-SOLVE CKD by Cathy Woods, and both Kevin and I were interested because we can share our experiences living with the disease. I feel I can offer advice and recommendations as CKD is an epidemic in First Nations, Métis and Inuit peoples. I feel that my experiences as a caregiver can be shared with researchers, policy makers, and medical staff working with CKD. I look forward to learning at the workshops and hearing about the advances and the research strategies for CKD.

Cathy Woods
Cathy WoodsCo-Chair, Indigenous Peoples' Engagement and Research Council

I am a proud Anishinaabe woman, originally from Northwestern Ontario, and now living in Winnipeg, Manitoba. In late 2010, I was diagnosed with Nephrotic Syndrome. My family physician first noticed some irregularities in routine medical tests and sent me to a renal specialist. After a referral to a renal specialist and a kidney biopsy, I was diagnosed with Idiopathic Membranous Nephropathy.

Although I will admit that it took a long time (summer of 2012) for me to feel better, I was fortunate that in early 2012, my albumin/creatinine ratio returned to normal. Living with kidney disease and knowing that at any point a relapse can happen, I decided to spend time with the Elders in my community. I also visited an Indigenous healer who gave me some traditional medicines. My family was very supportive, and with two sisters as nurses, it was helpful to understand the medical jargon. During this time, I was able to maintain a positive outlook on life and did all I could to get better.

What I found most fascinating about my journey is my chance to be part of something that will change the culture and focus of how we deal with those with CKD. When I was asked to attend the Can-SOLVE CKD workshop in June 2015, I was honoured and humbled to be part of this exciting initiative. It is my chance to give back to my community and to those who assisted me in dealing with my disease. I believe that the Can- SOLVE CKD network research projects can change the face of CKD for all by involving and including the patients and their caregivers in this process.