Social Clips

1 – Canadian Cystic Fibrosis Patients See Access to Orkambi Delayed for Undetermined Time Canadian patients with cystic fibrosis will have to wait longer for access to Orkambi (lumacaftor/ivacaftor). The submission for the therapy will be reconsidered at a future meeting by the Canadian Drug Expert Committee of…

In this TedEd video, shared in November 2014, watch an informative animation by Emma Bryce about how our lungs work. Traveling with cystic fibrosis can take a little extra planning, but there’s no reason why you can’t explore the country, as Beau Rich shows.  Breathing occurs 15-25 times a minute, and…

There is currently no cure for cystic fibrosis, but many medications and therapies are available to help patients maintain their health and live longer, more fulfilling lives. Treatment plans are uniquely tailored to each patient’s specific health characteristics and needs. CFTR Modulators for Cystic Fibrosis Patients with cystic fibrosis have mutations in the gene…

1. Partnership to Promote Next-Generation Diagnostic Test for CF Read about a partnership to simplify the adoption of next-generation DNA sequencing for routine diagnostic laboratories. According to the terms of the agreement, Sophia Genetics will use its advanced analytical platform, Sophia DDM, to support Devyser’s NGS diagnostic kits for cystic fibrosis…

CF Quotes by Max Carver When the actor Max Carver found out that a friend is living with cystic fibrosis, he didn’t sit back and do nothing. The actor, best known for his role in Teen Wolf, is helping to raise awareness for Cystic Fibrosis through Howl4ACure. Max is active…

In this WIVB TV video learn about Sammi Blum, a 17-year-old cystic fibrosis patient with a big heart who will celebrate her 18th birthday on Sept. 2. Read about 5-year-old cystic fibrosis patient Christopher Carmen and how his wishes came true on his birthday. Sammi has so far spent most of her…

Generally speaking, cystic fibrosis is a disease mostly diagnosed in newborns and infants because symptoms are apparent and progressive in a short amount of time. Most children are diagnosed before the age of two. 1 – Salty-Tasting Skin Secretions Symptoms to look for in a newborn include…

https://www.youtube.com/watch?v=l5L3etHrYHM The Cystic Fibrosis Trust UK is daring teams to take on the ‘Three Peaks Challenge’ to help raise money and awareness for cystic fibrosis. Read about six tips for caring for a family member with cystic fibrosis.  The Three Peaks Challenge held through October, consists of climbing the highest…

https://www.youtube.com/watch?v=BhFpFiZumS0 Cystic fibrosis is a genetic disorder that affects the lungs, pancreas, liver, and intestine.  It is one of the most common lung diseases in children, affecting approximately one in every 3,000 newborns. Read about 17 important facts and statistics about cystic fibrosis.  In this easy to understand…

Meet Gifted Organs, a pop band made up of transplant recipients and support musicians whose music celebrates the “Gift of Life” and increases awareness about the organ donation process. Learn more about cystic fibrosis and lung transplants here. “‘Gifted Organs’ hope to raise awareness,…