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Volunteer Advocate
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A look ahead to 2021

It is with optimism that we welcome the year 2021.

With this new year comes our renewed pledge to go even further for people living with cystic fibrosis (CF).

As the pandemic continues to impact everyone’s daily realities and our organization on many fronts, our team is working safely from home, ready and as determined as ever, to push for progress.  

I write to you today to share some of our plans for the year, so you know what your support is making possible. Everything we do is fueled by our collective and unwavering commitment to improve and lengthen the lives of Canadians living with cystic fibrosis.

A theme you will hear anchoring all of our plans is the importance of our work being directed by the needs of people living with cystic fibrosis. This year, a lot of our focus will be on learning more about our community’s concerns and priorities so that we can ensure our efforts can have meaningful impact. Based on a similar initiative by the US CF Foundation, called Community Voices, we are going to build a formal digital program that enables people living with CF, their families and friends to share input and guide our efforts.

Whether it’s research, treatment and care, support or the volunteer experience, we will be turning to you for input so that we can learn and take action.

Improve access to life-changing and life-sustaining medications

With the game changing drug Trikafta on its way to Canada, we will be focused on getting the drug into the hands of Canadians with CF as quickly as possible. This will mean continuing to work with our national advocacy network, partners, clinicians, community and all-party government caucus to push for a prompt drug review and approval with as broad an indication as possible. At the same time, we will advocate for public coverage of the three modulator drugs (Trikafta, Orkambi and Kalydeco), for which negotiations are currently under way.

To bolster these efforts, we will also work with the community to develop a new report quantifying the burden of care of cystic fibrosis.

Improve the quality of care and treatment experience

While together we have made much progress, we want to take some time this year to further understand our community’s experiences, with the goal of lessening the heavy burden that comes with this disease and cultivating innovative approaches for the future.

In addition, we will continue to work with people living with CF and clinicians to advance the quality of care in Canada through the development of new Canadian standards of care, including one on modulators, advancing our clinical trials network and rolling out our CF clinic accreditation program.

We will also deepen our collective understanding of the disease by bringing CF healthcare providers together so that best practices can be shared. With a near a 100% success rate, we will continue to invest in clinical fellowships so that we can encourage physicians to stay in the cystic fibrosis field. We will also support cystic fibrosis clinics as they maintain our Canadian CF Registry, a unique and critical source of data that monitors the disease progression in Canada and enables research.

Advance research on priority health needs

Through consultations with people living with cystic fibrosis, researchers and key opinion leaders within and outside of the cystic fibrosis sphere, we look forward to developing a new research strategy. It will focus on having greater near-term impact on Canadians with cystic fibrosis, while complimenting global research efforts.

Connection and support

You will find ongoing information and support offered via our Ask the Expert webinars, our Information and Referral Service and resources on our website, again centered on the needs of the community. We will also launch a new initiative, similar to a TED Talk series, where people living cystic fibrosis and their family members can share their inspiring stories, wisdom and learnings.

Strengthen the organization for impact

We have taken time over the last year to reflect not only on what we do, but how we do it. With this in mind, we will be developing and rolling out a diversity and inclusion plan and we will also explore how we can strength our volunteer experience.

Similar to many charities, we expect the global pandemic to continue to impact our revenue this year. Therefore, fundraising will be a critical priority as we again pursue virtual events and new ways to bring our community together. Our Walk to Make Cystic Fibrosis History will be held virtually on May 30 with the theme of breaking records and pushing further. I hope you will join me in the next two weeks and register and start the new year with ambitious goals.

While this does not cover all of our work, it gives you a sense of some of our priorities and how, with your help, we will continue to change the cystic fibrosis story.

Let’s charge into this year, let’s make change happen.