May 23, 2024

Charles Cook joined Can-SOLVE CKD as a patient partner in 2018 and wasted no time making a significant impact on the network – sharing stories, emceeing events, and participating on committees. For his exceptional work and dedication to the network, he was named the winner of the 2024 Barb LeGay Award for Patient-Oriented Research.

Cook has faced many health challenges in his life, starting with the diagnosis of a congenital heart condition at the age of 17. Several years later, he underwent heart surgery – but woke up to find that his life was saved at the cost of his kidney function. He started dialysis that same week.

“I was feeling all kinds of out of sorts – angry, frustrated, confused,” he recalls, noting that he felt alone until he spoke with other people who had encountered similar challenges. “And just talking to other patients really helped me out.”

After receiving heart transplant in 2016 and a kidney transplant in 2017, Cook saw the need to pay it forward. Understanding the power of stories, he began volunteering in dialysis clinics, where he approached people affected by kidney disease to share his own story and spread awareness about transplantation as part of the Transplant Ambassador Program. In 2022, he joined the Patient Governance Council (PGC), taking his involvement in patient-oriented research to the next level.

Through his role as a patient partner and member of the PGC, Cook provides feedback on research projects, ensuring they align with patient priorities. He also provides guidance and feedback through the network’s Inclusion, Diversity, Equity and Accessibility committee.

He says that patient-oriented research is important to him because, as a two-time transplant recipient, he will be a patient for life. “Advances in patient-oriented research will help me and help the people coming along behind me as well,” he emphasizes. “It’s important to make a better quality of life for all of us.”

Upon learning that he was the recipient of the Barb LeGay award, Cook took it upon himself to learn more about the woman behind the award – a powerful advocate for patients who was born blind and received multiple kidney transplants.

Cook sees the Barb LeGay award as the lifetime achievement award of Can-SOLVE CKD, and yet he has only been working with the network for a couple of years – so while the award recognizes his contributions to date, it also inspires him to do more. “I still have work to do, and I have plenty of motivational examples to go by, including Barb LeGay herself,” he says.

In particular, he wants to see a future where doctors and patients work together closely to achieve personalized medicine and person-centered care.

“That would be my ultimate dream – that you are treated as a person first, and a patient second,” Cook says. “In order for that to happen, the patient must feel like an equal and they are working [with their doctor] for the common good, which is a better outcome for the patient.”

Read more of Charles story: https://cansolveckd.ca/patient-voices/charles-cook/