We are pleased to announce that our Can-SOLVE CKD Patient Council is evolving! Due to the growth in interested patient partners, the Patient Council Executive held a number of strategic planning sessions to discuss the evolution of the Patient Council. A new structure and function emerged from these discussions, resulting in the formation of the new Patient Governance Circle!

The Patient Governance Circle brings together the existing Patient Council Executive members with a group of highly active patient partners who have taken on leadership roles across the Can-SOLVE CKD Network. The resulting 12-person Patient Governance Circle will be an agile decision-making body reflecting the significant breadth of expertise among Can-SOLVE CKD patient partners. As the network looks ahead, the newly formed Patient Governance Circle will allow our patient partners to be meaningfully engaged in the network’s activities as we expand our pool of partners across country. The new structure will also provide ongoing mentorship and guidance to the Can-SOLVE CKD Steering Committee as the network plans for a sustainable future.

The current Patient Council will be expanded to form a National Patient Network bringing together kidney patients from across Canada and connecting them through our online patient portal, KidneyLink.

The formation of the new Patient Governance Circle will support the continued growth and development of patient-oriented research within Canada. We would like to thank the Patient Governance Circle members for their continued commitment to providing better kidney health for Canadians through patient-oriented research. Continue reading to learn more about our Patient Governance Circle members!

Meet our Patient Governance Circle

” I’m looking forward to working with a bigger group in the Patient Governance Circle. Fresh faces and new ideas will add to what we’ve started in the Patient Council Executive. We were looking for ways to add sustainability as we move forward and the PGC is crucial as we enter the next phase of our development. “

Can-SOLVE CKD Involvement: Patient Governance Circle Co-Chair | IPERCCNTN Communications and Engagement Committee | Elders in Research Working Group | Indigenous Research Ethics and Protocols Working Group | Knowledge User and Knowledge Translation Committee | Learning Pathway Working Group | Research Operations Committee | Kidney CheckCell therapy interventions to prevent loss of kidney function |  Improving Indigenous patient knowledge about treatment options  | Increasing the use of living donor kidney transplantation

Mary Beaucage, is from Nipissing First Nation outside of North Bay Ontario. She brings a wealth of knowledge and enthusiasm to her new role as a Patient Governance Circle Co-Chair. After being diagnosed with CKD, being part of research and feedback workshops has been very meaningful to her as a member of the Can-SOLVE CKD community. She is passionate about educating and advocating, and has found strength in talking to others, especially those in the Indigenous and northern communities, as she moves through her healing journey.

Can-SOLVE CKD Involvement: CNTN Executive Committee | Canadian Glomerulonephritis Registry | KFRE: Integrating risk-based care for patients with CKD in the community | Cell therapy interventions to prevent loss of kidney function | Strategies to enhance patient self-management of CKD | KidneyPro Working Group | Knowledge Translation Community of Practice | Research Training and Mentorship Committee

Dwight Sparkes, lives in St John’s and works as a Senior Application Analyst with Newfoundland & Labrador Centre for Health Information. In 2014, Dwight was diagnosed with chronic tubulo-interstitial nephritis, caused by drug interaction while undergoing treatment for his vasculitis. Today Dwight’s vasculitis is in remission but lives with the effects of Chronic Kidney Disease every day. Dwight joined Can-SOLVE CKD as patient partner in 2017 as way to give back and hopefully be able to contribute to improving the lives of people living with CKD. Currently Dwight is a patient partner on 4 research projects, a member of the Curriculum and Membership Committee, patient co-chair of the CNTN Capacity Building Committee, and sits on the CNTN Executive Committee.

Can-SOLVE CKD Involvement: Canadian Glomerulonephritis Registry | Increasing the use of living donor kidney transplantationTransplant Ambassador Program

Susan McKenzie, is a chronic kidney disease patient and advocate who has familial glomerulonephritis (GN).She’s been on dialysis and has had a living donor transplant for 9 years. Four generations in her family have suffered with kidney disease and this propels her to seek to make changes in access to the right care at the right time. Susan has a masters degree in communications and works full time as Director of Development for the grand river hospital foundation in Kitchener Waterloo and spends as much time as she can with her 3 grown daughters and one month old grandson. She is also the co-creator and provincial co-lead of the Transplant Ambassador Program (TAP). Sue works with her colleagues to raise awareness of living transplant and provide meaningful conversations about transplantation to patients and family members. Her vision is that every patient and family member has an opportunity to talk to a Transplant Ambassador.

Can-SOLVE CKD Involvement: Patient Governance Circle Co-Chair | Triple I: Priorities for improving information, interaction, and individualization among patients on hemodialysis | Increasing the use of living donor kidney transplantation

Mike McCormick, At 18 years of age, Mike was diagnosed with Chronic Kidney Disease (CKD). His primary disease process is Focal Segmental Glomerulosclerosis (FSGS); he has been on hemodialysis for over 27 years, and on home hemodialysis for the past 15 years. As an active member of the Kidney Foundation of Canada – Ontario Branch and as a Peer Support Counselor, Mike believes that having access to a network of like-minded, progressive patients who have a keen interest in living a productive life, despite being diagnosed with CKD, is critical.

” I am honoured to be a member of the Patient Governance Council to share my knowledge, experiences and gifts as an Indigenous woman who was/is a caregiver to a transplant recipient and donor. As a patient partner, I have lived experiences that can hopefully help someone else who is affected by chronic kidney disease or transplantation. ”

Can-SOLVE CKD Involvement: IPERC Co-Chair | Kidney Check | Increasing the use of living donor kidney transplantation | Research Training and Mentorship Committee | Elders in Research Working Group | Learning Pathway Working Group | Indigenous Research Ethics and Protocols Working Group

Helen Robinson-Settee, was born and raised in Winnipeg, and is an Anishinaabe woman with family and community connection to Dauphin River First Nation which is located in the Interlake region of Manitoba about four hours northeast of Winnipeg. Helen is an educator and graduated from the University of Manitoba with a Bachelor degree in Education (1987) and with a Masters degree in Education (2014). Her expertise is in inner city education and Indigenous education. She has spent her 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 she currently holds since 2006. She is a wife, a mother of two adult sons, Craig and Kevin and a grandson, Ogimaabinens (3). Her 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 in the interim, used peritoneal dialysis until his kidney transplant in October 2012. His older brother, Craig donated a kidney to his younger brother. Helen is involved with Can-SOLVE CKD as a patient partner as a caregiver for Kevin since he was diagnosed with CKD as a child and living with the disease until his kidney transplant. Helen was introduced to Can-SOLVE CKD from Cathy Woods, and Helen, Kevin and Craig were interested because they can share their experiences living with the disease. Helen is a member of the Can-SOLVE Patient Governance Council, Co-Chair for the Indigenous Peoples Engagement Research Council, Lead for the Learning Pathway Group, member of the can-SOLVE CKD Curriculum and Mentorship Committee and Project 1.1B, Triple I and other working groups. Helen was recently diagnosed with Type 2 Diabetes in March 2018.

” I have been involved with Can-SOLVE CKD since the original grant review in 2015. My participation since 2015 has included participation as a patient lead, chair of a working group, member of the executive patient council as well as multiple committees and working groups. I am excited to be one of the co-chairs of the Patient Governance Circle as Can-Solve CKD continues to deliver on it’s commitment to Patient Oriented Research. “

Can-SOLVE CKD Involvement: Patient Governance Circle Co-Chair | Defining risk and personalizing treatment of patients with Autosomal Dominant Polycystic Kidney Disease (ADPKD) | Clinical trials of promising re-purposed drugs for ADPKD | Research Operations Committee

David Hillier, is a retired finance executive having worked for over 35 years within the financial services industry, primarily within the Toronto market. He has a wife, two daughters and two granddaughters. He was raised in Ottawa, Ontario and came from a family with nine siblings. As an advocate and caregiver for family members affected by Polycystic Kidney Disease, David has seen firsthand the medical and hospital care that is provided for CKD patients and has believed that there can be better, more effective health care models based on patient-focused research. He has been extremely impressed with the approach and structure of the Can-SOLVE CKD initiative since being asked to participate as a patient representative. All research projects and funding proposals are not only being vetted by clinicians and researchers but more importantly with the involvement of patients and caregivers, through a patient-focused “lens”. David believes that this ensures research outcomes will be more directly linked to the priorities that have been articulated by CKD patients. Based on these research initiatives, funding bodies will be assured that their investment will lead directly to patient outcomes and result in a significantly greater “bang for the buck”. Based on his involvement with Can-SOLVE CKD, he is now, far more optimistic that the funding, research and outcomes will dramatically improve the quality of life for CKD patients and caregivers.

Can-SOLVE CKD Involvement: CNTN Executive Committee | Triple I: Priorities for improving information, interaction, and individualization among patients on hemodialysis | Increasing the use of living donor kidney transplantation

Hans Vorster, is a Dutchman by birth, a Canadian, a husband and father by choice, an engineer by training, a researcher by occupation, a kidney (and cancer) patient by circumstance and an advocate and activist by inclination. Since his diagnosis with CKD (FSGS) 22 years ago, his journey has included MCKC, home hemodialysis and a transplant in March 2018. Subsequently, Hans has gained enormous respect and passion for patient-centered care and patient engagement in all aspects of medical care, including research. This has led him to be fully involved in several relevant organizations including Ontario Renal Network (ORN), KFOC, Organ Donation and Transplantation Collaborative (ODTC) and others, but principally with Can-SOLVE CKD. Hans sits on the Patient Governance Circle (PGC), the Executive of CNTN as well as co-chairing the Research Operations Committee. He is also a member of the Capacity Building Committee. Furthermore, Hans is a Patient Partner on 2 Can-SOLVE projects; Triple I and Living Donors, and has helped plan and organize the past 2 Annual Conferences. Hans believes idle retirement is boring while giving back and being productive is energizing. He'll always take the latter.

Can-SOLVE CKD Involvement: Patient Governance Circle Co-Chair | IPERC Co-Chair | Knowledge Translation Community of Practice | Kidney Check | KFRE: Integrating risk-based care for patients with CKD in the community

Cathy Woods, is a proud Anishinaabe woman originally from Northwestern Ontario now living on Treaty 1 land (Winnipeg Manitoba). Cathy has been involved with Can-SOLVE CKD since 2015 in leadership positions and committee work including the Indigenous Peoples Engagement Research Council. Cathy’s journey of kidney disease is her chance to give back to her community and to those who assisted her in dealing with her disease. As a patient partner Cathy strongly feels that patient-oriented research and the Can-SOLVE CKD network projects can change the face of CKD for all. Cathy believes that we can work together to improve the kidney health of all Canadians.

Can-SOLVE CKD Involvement: KidneyPro Working Group | Increasing the use of living donor kidney transplantation | Research Training and Mentorship Committee

Marian Reich, has recently finished a career in education. She taught elementary students in the Toronto District School Board. Currently she is a patient partner with Can SOLVE CKD and serves on the Patient Governance Council. She is a member of the Training and Mentorship Committee and the research project which she is working on is 3.3b seeking to find ways to improve the living transplant rates for patients with CKD. She is the co-lead of the Transplant Ambassador Program at Mackenzie Health Hospital in Richmond Hill Ontario. She is passionate about sharing her kidney donor story.

Can-SOLVE CKD Involvement: Increasing the use of living donor kidney transplantation 

Kate Chong, has been a patient partner within the CAN-Solve CKD Network from the very beginning, first being asked to sit on the steering committee and then helping build the first Patient Council with Michael McCormick and Cathy Woods. Following the first few years of development and initial growth, Kate stepped away from the co-chair role and stayed on patient council and one project to focus on her health, as it was her time to get a kidney transplant after 7 years of living with kidney disease. In September 2017, Kate was the fortunate recipient of a kidney transplant from a living donor (her amazing husband!). She looks forward to forging a new path towards CAN-Solve CKD 2.0 and being part of the Patient Governance Circle. In her day to day life, Kate leverages her passion for kidney health in her work for the Kidney Foundation of Canada, BC & Yukon branch as the Manager, Patient Services. In her spare time, she loves to be outdoors with her husband and dog. Fun Fact: 2019 will be Kate's 6th time participating in the Kidney March, which is 100 km walk over 3 days in the Kananaskis country raising funds for the Kidney Foundation!

Can-SOLVE CKD Involvement: CNTN Scientific Operations Committee | Portal Working Group

Anne MacPhee, is from Halifax, Nova Scotia. She is a mother of 3 and grandmother of one special child with Autism. Anne initially got involved with Can-SOLVE CKD because of her good friend Barb Legay. After Barbs death Anne was asked to carry on in her place at Can-SOLVE CKD. Anne is honored to carry the torch for Barb and all those who suffer from Kidney disease. Barb always wanted to make a difference through patient engagement for those who would follow her and it is Anne's personal mantra to do the same.

Can-SOLVE CKD Involvement: IPERC | KidneyPro Working Group | Knowledge Translation Community of Practice | Kidney Check | Targeted De-prescribing in patients with chronic kidney disease to decrease polypharmacy | Triple I: Priorities for improving information, interaction, and individualization among patients on hemodialysis | Research Training and Mentorship Committee

Arlene Desjarlais, is a proud Metis woman from Winnipeg. She is a daughter, a sister, and a mom. By day, Arlene is an office manager with an Executive Search Firm. She is also a very proud wife to her beloved and dearly departed husband, Glen, who passed away on February 18, 2016. Today, her life's mission is to carry on Glen's legacy by using her voice to champion all that the renal community is working on to not only find a cure for CKD but to also raise awareness. Arlene has found a purpose and a passion after the death of her beloved husband Glen to help ensure that no other family has to go through such a loss.

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