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Volunteer Advocate

Blog & News

Commitments for Trikafta

ADVOCACY‌‌ ‌‌UPDATES‌‌ ‌‌AND‌‌ ‌‌LATEST‌‌ ‌‌NEWS‌‌ ‌‌-‌‌ ‌‌MARCH 5

Learn about the progress of Trikafta through Canada’s drug review and reimbursement system, meet new members of the CF Canada advocacy team and get details of the support the cystic fibrosis community has received from elected officials - all in this week’s blog update.

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Federal caucus open letter to health minister

AN OPEN LETTER TO THE FEDERAL HEALTH MINISTER

In a tremendous show of support for the cystic fibrosis community, an open letter to  federal Health Minister, Patty Hadju, has been signed by 44 Members of Parliament from all political parties. 

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Update on covid-19 prioritzation

Update on COVID-19 vaccine prioritization for Canadians living with cystic fibrosis

In December of 2020, Dr. John Wallenburg, Chief Scientific Officer at Cystic Fibrosis Canada sent a letter to provincial Health Ministers urging provinces to prioritize Canadians living with cystic fibrosis (CF) and their caregivers, as they determine priority groups for the COVID-19 vaccination.

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65% of Canadians newly diagnosed with cystic fibrosis in 2019 were diagnosed through newborn screening 62% of all Canadians with cystic fibrosis are adults Cumulatively, CF patients spent over 25,264 days in hospital & attended nearly19,000 clinic visits in 2019
Upcoming Events
April 10, 2021
https://65rosesprincessball.crowdchange.net/
65 Roses Family Dance Party

Be our guest at the 65 roses family dance party!

Join us for the 65 Roses Family Dance Party taking place online on April 10th, 2021 at 6PM MST. Participants will tune in using a unique link sent to them before the event. We'll welcome you with sing-alongs, special character reveals, interactive activities, and enough toons to keep you movin’ and groovin’ all night long! Designed exclusively for kids ages 3 – 12, it will be a night your family won’t forget at the 65 Roses Family Dance Party!

For more information, please contact the Calgary & Southern Alberta Chapter of Cystic Fibrosis Canada at 403-266-5295 or email princessballyyc@cysticfibrosis.ca

Please visit https://65rosesprincessball.crowdchange.net/ to purchase tickets.

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May 30, 2021
2021 Virtual Walk to Make CF History- Toronto District

Join us virtually for the 2021 Walk to Make Cystic Fibrosis History!

*See event listing for more details on the Toronto & District Walks*

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CF Champions
Mia Gaudenzi
Age 12, Toronto, Ontario

My name is Mia Gaudenzi and I’m 12 years old. I was born a seemingly healthy baby until around 3 years old when I became ill with pneumonia regularly. Doctors just thought I was unlucky until I had my sweat chloride tests to rule out CF.

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