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September 2024 CEO Community Update

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From the desk of the CEO

SEPTEMBER 5, 2024

September 4, 2024.

Although our summers are short, they can be a good time to reflect and recharge. And this is exactly what we have done here at Cystic Fibrosis Canada. As we head into the fall, I feel energized by our work and what we have planned for the rest of the year.

That’s because there are so many activities underway to help us celebrate, connect, and advocate with and for the Canadian CF community.

Read on for updates and to learn how you can continue to support Cystic Fibrosis Canada.

WAYS TO GET INVOLVED

Now accepting new Elevate members!

Elevate is our program that invites people with lived experience of CF to contribute to our work. If you have CF or are a caregiver for someone with CF, we need you! Please sign up so you can help lend your advice to the work of Cystic Fibrosis Canada and other organizations, such as research organizations. When you sign up, you’ll receive occasional emails (1-2 a month) summarizing upcoming, optional opportunities and how you can get involved.

Signing up is easy — just fill out the registration form to start being notified of opportunities.

Participate in our awards program

Nominations are open until Monday, September 30.

Do you know a person or group who has demonstrated exceptional commitment, effort and impact in supporting the CF community? Cystic Fibrosis Canada has refreshed our awards program – and we’re accepting nominations until Monday, September 30. Awards are available in a range of categories including the King Charles III Coronation Medal* – a once-in-a-lifetime opportunity.

*submission deadline is Monday, September 19 for this award category

Save the date for our November Town Halls

Everyone in the Canadian CF community is invited to our upcoming Town Halls:

Join us for an hour to hear the latest updates from our team. Special guests from the research/clinical world will speak about their work to help people in Canada live beyond the limits of CF.

Registration is required to attend the Town Halls – details will be published on our Events Calendar when available. Even if you’re not able to attend, registering will ensure you receive a recording afterwards.

I’m looking forward to seeing you there!

COMMUNITY UPDATES

Your advocacy in action!

Earlier this summer, we asked you to join us in advocating for unrestricted access to Trikafta for all who may benefit, and you stepped up in a big way: more than 3,300 of you sent letters to your provincial/territorial government representatives! Your efforts have the power to get even more Canadians access to Trikafta, because Health Canada recently approved the drug for anyone with a CFTR gene mutation that has shown a positive response. But as we know from past advocacy efforts, provinces and territories need to fund Trikafta in order for people to affordably access it. That’s why your advocacy matters, and we’re grateful to every one of you who sent a letter. Watch our social media channels (Twitter/X, Instagram and Facebook) for updates.

Coming soon: the new cysticfibrosis.ca!

We’ve been working behind the scenes on a better online experience for visitors to cysticfibrosis.ca. And now, the countdown is on! In the next few months, we will be launching a new website that embodies our passion and commitment to help everyone affected by CF to live without limits. Needed information and resources will be organized intuitively, with a fresh new look that will make it easier for you to find what you’re looking for. Stay tuned!

As always, I am so thankful to you in the CF community for your commitment to ensuring a brighter future for all affected by cystic fibrosis in Canada. One of our organization’s goals this year has been to connect with you in new ways, and I hope the above updates and opportunities are a good demonstration of that. Your contributions matter so much, because it’s YOU who make our collective efforts so powerful.

Together, we will ensure that everyone in Canada can live a life without limits from their CF.

Kelly Grover 
President & CEO 

P.S. We recently introduced a new way for you to stay connected with us – text message/SMS. This is an easy way for you to get the latest information about advocacy, research and opportunities to support people living with CF in Canada. We need and want your permission to start texting you, so please sign up now to receive messages.