Cystic Fibrosis Canada
4664 Lougheed Highway, Unit 254 V5C 3Y2 Burnaby, BC, Canada

This Rare Disease Day we are pleased to share our open letter to Patty Hadju, federal Minister of Health, which came from the All Party Emergency Access to Trik...afta caucus we formed. The letter asks for Minister Hadju’s support to get Trikafta approved for the broadest indication possible and to use her influence to speed up the negotiations with the manufacturer. Signed by 44 Members of Parliament from all political parties, the letter is a tremendous show of support for the cystic fibrosis community. Thank you to CF Get Loud and CFAdvocacyNow for your collaboration on this important work. To find out more about our advocacy work pushing further for access to medicines in Canada, and how you can get involved, please visit our website.

Join us on March 4 as CF Canada’s President and CEO, Kelly Grover, hosts our latest advocacy webinar focused on today’s political environment, what it means for... access to CF drugs and how you can help. Special guest Michelle McLean, Hill+Knowlton’s National Health + Wellness Sector Lead, will present Canada’s political climate, the state of healthcare, the possibility of a federal election and what this all means for access to Trikafta and other CF drugs. Patti Tweed, member of Cystic Fibrosis Canada’s National Advocacy Network, will also share her experience as an advocate and present how advocacy volunteers play a key role to ensure people with CF have access to the best care and treatments possible. English: 6:00 -7:00pm EST Thursday 4th March, 2021. To attend: https://us02web.zoom.us/j/87186551060. French: 7:30-8:30 EST Thursday 4th March, 2021. To attend: https://us02web.zoom.us/j/83955731893. See more

We need your help! We are looking for Walk stories from BC & Yukon to feature. - A few lines about why you are walking - A high-resolution photograph of you from a past Walk, wearing a CF Canada shirt, if possible Please send to [email protected] or message Sandra with your details. Thank you!... Register for the Walk today! We have a new site so get your team together and join our virtual walk to help us in our mission to end CF: https://walk-cysticfibrosiscanada.crowdchange.ca/

Join our rescheduled webinar on Thursday 4th March to hear more on the current state of politics how that impacts access to CF modulators. Special guest Michell...e McLean, Hill+Knowlton’s National Health + Wellness Sector Lead, will give us insights into Canada’s political climate, the state of healthcare, the possibility of a federal election and what this all means for access to Trikafta and other CF drugs. Plus, be inspired by Patti Tweed, one of Manitoba’s provincial lead advocates for Cystic Fibrosis Canada’s National Advocacy Network. Patti will talk about her experience as an advocate and present how CF Canada and its advocacy volunteers work to ensure people with CF have access to the best care and treatments possible. English: 6-7pm https://us02web.zoom.us/j/87186551060 French 7.30-8.30pm https://us02web.zoom.us/j/83955731893

Well, I’ve officially entered the last year of my 20s JK, I’m pretty sure my 30s will be my time. I’ve had a lot of ups and downs from age 23-28, so I’m hopeful my 29th year will be my redemption year! I know this is cheesy to bring up, but I have to say it. When I was diagnosed with #cysticfibrosis the Drs told my parents that my life expectancy was 18. I’m so happy I beat the odds! I’ve never really been the kind of person who listened fully to what the Drs said. It was... more of a suggestion in my mind It’s no secret that the last year was one of the hardest years of my life. Getting as sick as I did, facing needing a double lung transplant... I’m not going to lie, for a minute there I was pretty scared. Scared I’d be leaving Ben and my family behind. Leaving them to pick up the pieces of my life. I am so GD grateful I have my parents, Ben, my whole family who never gave up, who kept fighting for my access to #trikafta I don’t know if I’d be here if I hadn’t gotten it back in September. My life has opened back up, and I’m so excited for what my 29th year has to offer! (Swipe for a photo of Ben showing me how to pose properly ) Reposted with permission by Nicole S. from @stringerlife Instagram

Do you want to change your car in the new year? Did you know that you can donate your old car to the Car for Life program? In exchange, we will provide you w...ith a tax receipt for the value of the vehicle! Since 2018, over $4,000 has been donated to our cause through this program. For more information https://arpac.org/carforlife/

Cystic Fibrosis Canada wishes a Happy New Year 2021 to the CF community and their loved ones ! We are fortunate to have you on our side in our fight towards a world without CF, and we wish our community a year filled with victories. On a personal note, I want to thank you all for your support and efforts as we work hard to end CF, leaving no-one behind. We continue to raise funds for research, advocacy and care, until CF stands for 'Cure Found'. Sandra Niven, BC/Yukon Vancouver office

Happy New Year! Let’s push further for people living with cystic fibrosis in 2021!

If you have some free time over the holiday break and are looking to brush up on your advocacy knowledge, check out our webinar recordings. We’ve been running a... series of webinars on access to medications in Canada. The webinars cover information about how modulators work, Health Canada’s approval process and the steps Trikafta will need to go through in order to get into the hands of Canadians living with CF. The recordings are available here: http://bit.ly/2P6piN2

Our latest CF Canada annual data report is now available on our website. cysticfibrosis.ca/our-p/cf-registry/reports-other-resources