My Every Breath

06/11/2025

06/02/2025

CFTR modulator therapies: A breakthrough in treating cystic fibrosis –and why Alyftrek deserves your voice.

Cystic fibrosis has long been viewed as a relentless and life-limiting condition, with treatment historically focused on managing symptoms rather than addressing the underlying cause. But the emergence of CFTR (Cystic Fibrosis Transmembrane Conductance Regulator) modulator therapies has radically changed that narrative, offering new hope to thousands of people living with CF. These revolutionary drugs target the root cause of the disease — mutations in the CFTR gene — and not just the symptoms.

Read More : https://acrobat.adobe.com/id/urn:aaid:sc:AP:0f469bcd-2750-40ae-b6ed-4ae366451c40

03/01/2025

What does it look like to live with a rare disease? In recognition of Rare Disease Day, share a photo of yourself or your loved one with cystic fibrosis in the comments below to share what life looks with a rare disease.

06/13/2024

Ninety percent of Canadians say they support organ donation; only 32% are actually registered. We’re on a mission to get as many Canadians registered as possible. The more registered organ donors there are, the more likely that the 4000+ Canadians on the waiting list right now will not have to wait so long for lifesaving transplants.

Registering to donate your organs is a really easy process.

We’re talking five minutes tops on your computer or phone.

Registering to be an organ donor does not mean you will actually be one at the end of your life. It just means that you would like to be one. If you happen to die in a way where your organs can be donated (only 1-2% of people die this way), then you may become an organ donor at the end of your life. If you support organ donation, please register your decision at www.donateyourorgans.ca.

Choose to leave well so others can live well.

03/23/2024

03/19/2024

The Gift of Life flag is flying today. Raised at HSC_Winnipeg, the flag is up in honour of a donor, someone who has offered a life-saving gift to others in need either through living or deceased organ donation. The flag is a tribute to the courage, compassion and generosity of the donor and recognizes the decision to say yes to organ donation. Thank you.

02/22/2024

Documentary about David and Dennis Pischke, the twins featured in the book, "Where Children Run." This video was shot on location in Moosehorn, Manitoba by j...

06/11/2023

05/02/2022

Cystic Fibrosis Awareness Month!
50 years from now when Cystic Fibrosis is finally cured, remember us. Remember the kids that didn't make it. Remember our brothers and sisters who worried about us every day of our lives. Our parents who watched us get sick, struggle with defeats, and triumph over adversity.

Remember our husbands, wives, boyfriends, and girlfriends who not only took the risk to be with us but also sat in the hospital with us days on end where the words "visiting hours" didn't apply to them.

Please remember our physical weakness had no power over the strength of our minds, even in the last days. Remember how hard we fought through broken ribs, diabetes, failing lungs, enlarged hearts, poisoned kidneys and livers.

Remember that YOUR love keeps us going when we want to give up. Your face motivates us to do what we need to do to survive.

But most importantly remember our reassuring smiles, that tears are okay, that they symbolize strength to hold on just a little bit longer.

50 years from now when they cure Cystic Fibrosis, celebrate for me and for others like me."

- Author Unknown

Happy Cystic Fibrosis Awareness Month 🌷🌷

04/07/2022

03/01/2022

Double Lung Transplant my gift of life 18 years today! What a journey! Sometimes I have to pinch myself to make sure I’m not dreaming. I must say it has all been worth it and more.
These past couple of years have been indescribable for anyone on immunosuppressants. This medication I’m on so I don’t reject my new lungs, lowers my immune system. I can go into rejection with just a common cold so I always have to be careful. No one knows how Covid and all the variants that followed would affect us. I could not take any chances especially at the beginning. As much as I was careful I still got the Omicron virus. I was lucky enough to get it mild but still scared the life out of me.
Life since Transplant has thrown us some curve balls but still muddled through with positive thoughts.
I’m so thankful for life and all the love from family and friends and most of all my husband Gilles , kids and beautiful grandchildren. Hope I have many more to explore. ❤️

11/25/2021

Great news! Every province and territory, as well as the Federal Drug Program has confirmed they will publicly fund Trikafta!! Cystic Fibrosis Canada is very happy to confirm that Trikafta is now available through Nunavut’s public drug plan.

Nunavut is the final jurisdiction in Canada to confirm public funding for this transformational drug. This is a wonderful milestone to mark, and we could not be here today without the hard work and support of you, the incredible CF community, including our advocates and donors.

While we celebrate this great moment, we do not lose sight of the fact that funding approval does not necessarily mean access. Too many Canadians with CF are currently struggling to cut through the red tape standing in the way of getting Trikafta in hand. Cystic Fibrosis Canada remains committed to going further until everyone who could benefit from this drug – and from other modulators - has access. We also do not forget those we lost along the way, and those who aren’t able to benefit from Trikafta. With your support, we will continue to advance research and access to future therapies, until we find a cure.