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from the desk of the CEO

Spring update from the desk of the CEO

As temperatures slowly warm and the days get a little longer, we at Cystic Fibrosis Canada are feeling more ready than ever to make positive change for our community.

We’re pushing further in every aspect of our work to achieve the progress the Canadian cystic fibrosis community needs and deserves.

I’m sharing this update with you so that you too will feel energized and hopeful about the important work happening over the next few months.

As always, a mighty group of volunteers, donors, community members and Cystic Fibrosis Canada staff have been unrelenting in our push for progress. If you’re reading this, that includes you, too. Your unwavering support continues to be a great source of strength for all of us. Thank you.

CF CAN’T WAIT

Your support of Cystic Fibrosis Canada, whether through donating, volunteering, advocating or fundraising, has helped to ensure the lifechanging cystic fibrosis drug, Trikafta, has made it to Canada and is finally advancing through the Canadian drug approval process.

Key regulatory bodies, such as Health Canada and the Canadian Agency for Drugs and Technology (CADTH), are expected to complete their reviews of the drug in June. We are hopeful for positive outcomes and are ready to take action to continue our fight for access to this drug. Pending positive outcomes, our next urgent hurdle to cross will be ensuring the provinces list Trikafta, as well as other existing modulators, on their public drug plans for as many people as possible.  

To continue the fight for Trikafta, we are running a #CFcantwait Provincial Meeting Challenge in April and May to encourage our community to meet with their provincial elected representatives and share our collective message: CF can’t wait! The incredible advocates of the Cystic Fibrosis Canada National Advocacy Network will be leading the charge on this initiative, empowered by our tools and resources that your support makes possible.

We’ll also be providing a number of ways for you to get involved in our fight for access and I am confident that together we can make our point that Canadians with cystic fibrosis deserve and must have access to life changing drugs now.

Later this spring we will launch a comprehensive study on the burden that cystic fibrosis has on individuals, families and society. Focusing on people living with cystic fibrosis and their caregivers, this study will determine the real cost of living with the disease, both in terms of money and time. The results of this study will inform our programming, educate government decision-makers about the full impact of this disease, and will shape our advocacy work. This study was requested by many in our community, and we look forward to sharing more information on it soon.

Finally, at the federal level, we continue to push for policy changes that will ensure new and innovative cystic fibrosis therapies are able to come to Canada now and into the future.

Our work advocating for access to medicines is fast moving and if you are interested in receiving regular updates, please  sign up for our new advocacy newsletter “The Advocacy Brief.”

RESEARCH STRATEGY BASED ON PRIORITY HEALTH NEEDS

Research is a fundamental way we can impact the future of cystic fibrosis and this year we are very excited to work with you to reimagine what Cystic Fibrosis Canada’s research strategy will look like in years to come.

In the coming months, we will be consulting with people living with cystic fibrosis, researchers and key opinion leaders within and outside of the cystic fibrosis sphere to develop a new research strategy that will guide our investments in the future – investments made possible by people like you

It is important this strategy is based on the needs of people diagnosed with cystic fibrosis. We are interestedin focusing the strategy on having greater near-term impact on Canadians with cystic fibrosis, while complementing global research efforts. This strategy will also consider innovative ways to support the 5% of people living with cystic fibrosis who cannot benefit from modulators – a matter of great importance to us.

WITH AND FOR OUR COMMUNITY

Understanding your priorities and experiences is critical to ensuring we are focused on the right things, in the right way. In the coming months, we will be rolling out a new program that will invite people living with cystic fibrosis and their caregivers to sign-up and regularly share input on our work and in turn, guide our efforts and shape the future of cystic fibrosis. Whether it’s participating in Cystic Fibrosis Canada focus groups and surveys or research for a university, it will provide a flexible and empowering way for people impacted by the disease to influence research, treatments and care. 

Last year in honour of our 60th anniversary, we asked you, our community members, to share your advice for future families impacted by cystic fibrosis. Today, I am pleased to share the compilation video of your expert advice. It is heartwarming to see the hope and resilience you display. I know future cystic fibrosis families will find comfort in your words.

#gofurtherfor

It is that time of year when thousands of people across the country virtually unite through our Walk to Make Cystic Fibrosis History. This year we are striving to #GoFurtherFor people impacted by the disease. If you have not yet registered, please register now and start your fundraising! It is an important event that virtually connects us, inspires us, and raises critical funds that fuel our work. Think about who inspires you to go further, choose your challenge and then set an ambitious fundraising goal in their name. I’ll be walking and going further with our puppy Choko for everyone diagnosed with cystic fibrosis from coast to coast, and I hope you will join me.

I wish everyone sunnier days ahead. And please know that, despite the challenges our community has faced including the pandemic, we are moving forward together with a fierce conviction to improve and change the lives of those impacted by cystic fibrosis. Thank you for your continued support.e