Stepping Together for Our Son
Cystic Fibrosis Canada
by Cystic Fibrosis Canada
1d ago
Our journey alongside our 9-year-old son, Loïc, who lives with a rare mutation of cystic fibrosis, has been both a challenge and an enlightening experience. Our daily lives are filled with routines aimed at managing Loïc’s condition—routines that include countless medications, therapies and constant infections. Yet, it’s the simple pleasures of childhood that CF often threatens to overshadow.  As a parent, it’s difficult to hear him say that he wants to play outside instead of doing his respiratory therapy. Countless park visits with his brother cut short by fatigue, the birthday parties ..read more
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A Father’s Vision for A CF-Free World
Cystic Fibrosis Canada
by Cystic Fibrosis Canada
6d ago
As a father, the last seven years of my life have been paved with moments of profound fear, boundless love and an unwavering commitment to my son, Andre, who lives with cystic fibrosis (CF).  The day we learned of Andre’s diagnosis was a day our world turned on its axis. The fear, guilt and uncertainty that enveloped my wife, Liz, and me were indescribable. Yet, it was through the support of friends, the CF community, and the exceptional care from the Toronto CF clinic at SickKids that we found our footing again. They showed us that CF did not mean the end but a different kind of beginnin ..read more
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No More Missed Moments
Cystic Fibrosis Canada
by Cystic Fibrosis Canada
1M ago
Hi! My name is Lauren Anderson, a 22-year-old with a story not just about living with cystic fibrosis (CF), but thriving despite it. As a young woman attending Brock University with dreams of becoming a teacher, I’ve faced more challenges than most. From enduring hospital stays due to lung infections to navigating the complexities of daily treatments, my journey required lots of perseverance!  CF has taught me invaluable lessons about the preciousness of time and the strength that comes from facing adversities head on. Despite the hurdles, I refuse to let CF define me. Instead, it has sha ..read more
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A LIFE-CHANGING REFERRAL
Cystic Fibrosis Canada
by author1
3M ago
Edmonton to Vancouver, Vancouver to Edmonton. In 2019, Isaiah, who lives with cystic fibrosis (CF), was at the airport every two months travelling from home in Edmonton to participate in an antibiotic study at the BC Children’s Hospital in Vancouver, a distance of 1,200 kms. He was referred to the study by his clinic team in Edmonton and was then contacted by Alam, the research coordinator from the BC Children’s Hospital CF CanACT site. Even prior to agreeing to participate, Isaiah recalls having numerous email exchanges with Alam where they got to know each other, and Isaiah was able to learn ..read more
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2022-24 Research Impact Report
Cystic Fibrosis Canada
by author1
3M ago
Our investments in research are made possible through the generosity of our donors and have led to outstanding progress in support of people living with cystic fibrosis. From discovering the gene responsible for CF to creating the protocol now broadly adopted to repair donor lungs, researchers funded by Cystic Fibrosis Canada have gone further in discovery and are closer to a cure than ever before. And we aren’t done yet.   2022-2024 research at a glance  Committed more than $5M in funding   – With support from our funding partners, doubling the impact of donor dollars.&nb ..read more
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Shinerama Shines On: Celebrating 59 Years of Sparkling Success in Student Fundraising
Cystic Fibrosis Canada
by Cystic Fibrosis Canada
4M ago
Thousands of post-secondary students across Canada banded together this Shinetember to raise essential funds for cystic fibrosis research, care and advocacy.  Shinerama is Canada’s largest post-secondary fundraising event for cystic fibrosis (CF), raising over $29 million in its 59-year history. It continues to play a big part in the student experience, encouraging first-year students to meet new people and give back to their local community during orientation week.   This Shinetember, Cystic Fibrosis Canada worked directly with more than 60 student leaders at 21 schools across ..read more
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Health Canada approval signals shift in CF treatment for newborns 
Cystic Fibrosis Canada
by author1
4M ago
Health Canada has approved the cystic fibrosis drug Kalydeco (Ivacaftor) for children aged 2-4 months old who have one of the following mutations in the CFTR gene: G551D, G1244E, G1349D, G178R, G551S, S1251N, S1255P, S549N,S549R or R117H.   Based on birth data from previous years, Cystic Fibrosis Canada estimates that this change will impact approximately five babies each year. While this approval will impact a small number of families, it is a significant development in the treatment of CF.   Newborn screening for cystic fibrosis is standard practice for all newborns in Ca ..read more
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Financial Resources available to Canadians with CF
Cystic Fibrosis Canada
by Cystic Fibrosis Canada
4M ago
The reality of a cystic fibrosis (CF) diagnosis has changed drastically with improvements in treatment and care and the introduction of modulator therapies. Some Canadians with CF are living longer and healthier lives, which comes with additional considerations that you may not have planned for. Living with a genetic disease like cystic fibrosis can be a stress on finances. There is time spent away from work due to hospital stays, the added expenses of travelling to clinic visits, CF treatment equipment and medications and some Canadians with CF or caregivers have had to leave a job or work pa ..read more
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Chanelle’s Journey with Cystic Fibrosis
Cystic Fibrosis Canada
by Cystic Fibrosis Canada
4M ago
Hello, I’m Chanelle, a 25-year-old CF warrior from Cornwall, Ontario. This year, I faced one of the biggest challenges of my life — the removal of my right lung. Despite this, I continue to find joy in creativity and the companionship of my best friend, my dog Everest. As the holiday season approaches, I want to share my story and how we can all contribute to a world without CF.  Diagnosed with CF at 7, I didn’t fully grasp the gravity of my condition. My childhood suddenly became a series of treatments, doctor’s appointments, and hospital stays. The reality of living with a terminal illn ..read more
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The Tirabassi Family: Our Journey with Cystic Fibrosis 
Cystic Fibrosis Canada
by Cystic Fibrosis Canada
4M ago
As the mother of a child with cystic fibrosis (CF), I’ve learned that hope is a powerful force. It’s what drives us forward, pushing us to go further for everyone living with this relentless disease. Today, I want to share our story — a story of struggle, resilience, and a plea for your support in making a life without CF a reality, not just a distant dream.  Matthew, my youngest son, was born with CF, a genetic disease that has profoundly impacted every aspect of his life. From countless hospital visits to daily nebulizer treatments and the constant fear of infections, CF has been an uni ..read more
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