Meet the Team: photo of Jana

NOVEMBER 15, 2022

Meet Jana: A mother, sports enthusiast and advocate for improved health outcomes for people living with cystic fibrosis since her youngest child was diagnosed in 2014. As the Director of the Healthcare Program at Cystic Fibrosis Canada, Jana is motivated to work with the CF community, meeting with and listening to the needs of people living with cystic fibrosis and ensuring they are reflected in all that we do. In this interview, Jana reflects on how her cystic fibrosis story impacts her work here at Cystic Fibrosis Canada.

Tell us about yourself. What would you like the Cystic Fibrosis Canada community to know about you?

My name is Jana Kocourek and I am the new Director of the Healthcare Program at Cystic Fibrosis Canada. I have been with the organization since July 2022, but I already know I’m in the right place. I’m beyond excited to be working with the CF community. The passion of people living with CF, caregivers and clinicians really underscores the work that is and has been done related to accessing life changing medications and the evolution of care for the CF community. I hope to play my part within the CF community by listening to people’s needs, enhancing their voices and ensuring they are reflected in all that we do here at Cystic Fibrosis Canada.

Personally, I have two kids, a son who is eight and lives with CF and a daughter who is 15, a husband and two pups (golden retriever and black lab). I’m located in Ottawa, Ontario and have lived here most of my life. Outside of work, you will find me in hockey arenas, driving the kids around, outdoors with the pups and on hiking trails throughout the city.

Tell us about your cystic fibrosis story

It’s quite serendipitous that I am working at Cystic Fibrosis Canada. I have been passionate and fully invested in the CF community since June 15, 2014, the day my youngest child Lukas was diagnosed with CF during his newborn screening. That day changed our lives forever, in more ways than one. Like many within the CF community I live and breathe the disease every day as a caregiver, and now within my professional life. In the short eight years since Lukas’s diagnosis, I have seen his resilience, perseverance and commitment to his treatments. It has allowed me to understand our family within his disease. I have also seen the evolution of care change drastically and within that change comes hope for many…but we still have a way to go to ensure that the entire CF community has access and reaps the benefits from life changing treatments. I am excited to be part of the CF community in a different way now and work with likeminded people.

As the Program Director – Healthcare, can you tell us a bit about your role at CF Canada and how long you’ve been with the organization?

My role as the Director of Healthcare is to understand and support the healthcare-related needs of the CF community (meaning people living with CF, parents/caregivers and clinicians). This is done through engagement with the entire CF community, co-chairing the Cystic Fibrosis Canada Healthcare Advisory Committee and overseeing the healthcare program. The healthcare program currently consists of four main areas: accreditation site visits, grants and awards (for clinicians), development of clinical guidelines and standards of care, and development of resources for people living with CF, parents/caregivers and clinicians. This year, we are refreshing the healthcare program by working with the CF community to understand their current and future needs.

What motivates you at work?

Working with the CF community motivates me every day. Meeting with and listening to people living with CF, their caregivers and clinicians about their shifting needs, how they would like to be engaged, the new trends and topics we should be focusing on and how Cystic Fibrosis Canada can be part of their journey.

What has been your favourite experience working at Cystic Fibrosis Canada so far?

The Cystic Fibrosis Canada team is remarkable. Each person brings passion and expertise to their work, and that energizes and motivates me. I learn so much from them every day, and we have some laughs which is very important. It has been an incredible honour to be able to start meeting with CF community members and understanding the needs and experiences of people living with CF, caregivers and clinicians.

What are you passionate about outside of work?

I am most passionate about spending time with my family. Living in Ottawa, we get to enjoy all of the nature trails that it has to offer. We are a very active family, being involved in competitive ice hockey either through playing, coaching and being hockey parents. We also ski, play golf, tennis and enjoy spending time outside with family and friends. Travel is a big part of our lives and we are looking forward to getting back to travelling this year.

What does going further for cystic fibrosis mean to you?

Going further for cystic fibrosis means that we are nimble, responsive, timely, innovative and listen to the CF community about what is important to them. We have come so far with supporting the rollout of Trikafta but there is still so much left to do. CF will always be a lifetime journey and seeing the community thrive throughout their journey means we are going further, one step at a time.