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Volunteer Advocate
cf insights cf insights

What we are hopeful for

As our Cystic Fibrosis Awareness Month campaign “Let’s Hope” is now launching, we wanted to ask our community what they are hopeful for. Please feel free to share your message of hope as well!

– “I am hopeful for all those with CF who are getting diagnosed through newborn screening. It is a difficult life and poses many challenges and struggles, but in a world full of new medications and ever-growing technology, I hope they get the life-changing drugs that can protect their future. To live with CF, but not let it control your life is the ultimate dream.” – Meaghan MacRury

– “As a person living with cystic fibrosis, I am hopeful for many things. I am hopeful that the medications and care I need are accessible to me and to others. I am hopeful that I can return to doing some of the things that I was once able to do on a more active level. I am hopeful that one day I can breathe deeper and breathe easy. I am also hopeful that I will be able to grow older with my wife.” – Alex McCombes

– “I am hopeful we can make a difference for the next generation of CF patients and families; medical advances and access to specialized treatment and hopefully the eradication of CF. I am hopeful changes within the way access to quality of life, better legislation to allow patients and families manage the weight of medical expenses. Finally, I believe that innovation in organ donation will reduce the use of anti-rejection medication.” – Rob Burtch

– “Good question with lots of answers! I’m hopeful my treatment of Kalydeco will maintain its effectiveness. I’m hopeful that the red tape it takes to get drugs like Kalydeco into the hands of those who need it takes little time and that there is little resistance from now on. I’m hopeful that I can grow simply to be a burden on my family. (Tongue in cheek here btw). I’m always hopeful that a cure for CF is just around the corner.“ – Tim Vallillee

-“ I am hopeful that one day I will no longer have to hear about a fellow CF person passing away from complications of CF, and that someday soon CF will truly stand for Cure Found. I am hopeful that every CF person who undergoes a double-lung transplant enjoys the level of health and wellness that I have been so blessed with. I am hopeful that eventually, double-lung transplantation as a treatment for CF will no longer be necessary. I am hopeful that our provincial governing bodies will someday “get it” when it comes to people’s quality of life vs. the almighty dollar (regarding access to life-saving treatment and drugs). I am hopeful that I can make a difference in the lives of others that have CF.” – Brenda Chambers-Ivey

 

Fight for everything they hope for by giving more than hope. Join our fight for access to Orkambi: https://bit.ly/2FxZuCl