What are the Principles, Mission and Priorities of the Organization?
Principles
- Informed by people living with cystic fibrosis
- Dedicated to innovation
- Committed to working in partnership
- Focused on our niche within the global context
Mission
To strive to improve the health and quality of life for all people with cystic fibrosis, and to find a cure.
Priorities
- Improve access to life-changing and life-sustaining medicines
- Improve the quality of care and treatment experience
- Advance research on priority health needs
- Leverage digital strategies and peer connections
- Strengthen the organization for both staff and volunteers
What is Cystic Fibrosis (CF)?
CF is a genetic disorder that often affects multiple organ systems (largely lungs and pancreas) of the body and is characterized by abnormalities affecting certain glands of the body especially those that produce and secrete mucus. Saliva and sweat glands may also be affected.
These secretions become abnormally thick and can clog up vital areas of the body causing inflammation, obstruction and infection.
Cystic fibrosis is an inherited disease and can affect anyone from any racial group. Because it has historically been thought of as a “white” disease, it sometimes gets missed in people who are BIPOC and a late diagnosis can mean worse outcomes.
Due to newborn screening, most people with CF are diagnosed early. And, due to new drug treatments, many are living longer and are much healthier. In 2019, Trikafta was approved as the first triple combination therapy to treat patients 12 years and older with certain mutations, estimated to be ~90% of the CF population. However, a minority of CF patients with different gene mutations are not approved for the drug; nor are children ages 2 – 6. Cystic Fibrosis is considered a rare disease. Health Canada has adopted a definition of a rare disease being one that affects fewer than 5 in 10,000 Canadians.
Hilary’s Story
From the early days of my diagnosis at six months old, CF has been a constant companion in my thirty years of life. As I navigated the challenges and uncertainties, I discovered an unstoppable spirit within myself. Despite the grim prognosis given to my parents—that I might only live until my teens or early twenties—I remained determined to make the most of every moment.
My life changed dramatically when I started taking Trikafta in January 2022. Before Trikafta, my health was deteriorating, and hospital visits became alarmingly frequent. I battled double pneumonia, kidney stones, and debilitating muscle injuries. Homecare became my new reality, as I managed my own treatments, needles, and medications, desperate to survive.
But then, in October 2021, a ray of hope emerged. Like many others who have started this ground-breaking medication, my life took a 180-degree turn. No longer plagued by incessant coughing, I experienced restful nights, improved digestion, and a regained sense of vitality.
My hopes for the future of CF research, care and access to medicines are multifaceted. Firstly, I yearn for a day when CF stands for “Cure Found.” We must continue to push the boundaries of scientific research to uncover breakthrough treatments and, ultimately, find a cure.
Living with cystic fibrosis has shaped me into the resilient, hopeful and strong individual I am today. Trikafta has unlocked a world of possibilities, allowing me to thrive and dream of a future that was once uncertain. However, the journey is far from over. We must continue to advocate for those who have yet to benefit from new treatments, pushing the boundaries of research, and expanding access to life-changing medications.
For more information view this heartbreaking video story of Annie B.
or view this video from CF Canada.
