According to the Children’s Hospital of Nevada’s Facebook, last week, one of their patients, Dilan Kohn got his final wish. The Cystic Fibrosis 17-year-old boy desperately wanted to meet and hang out with Gene Simmons from the band “KISS”. Mr. Simmons had not only been Dilan’s idol, but also…
Social Clips
Join The Cystic Fibrosis Foundation for this year’s 19th annual Grand Chefs Gala, at its new venue- Navy Pier! It will be this Friday, Jan. 29, 2016 from 6pm – midnight. The gala brings together over 50 of Chicago’s finest chefs and mixologists, who personally prepare signature dishes, desserts…
In this video by the Cystic Fibrosis Trust, take “a look at Bristol’s strategic research centre studying the main cause of cystic fibrosis – a defect in the CFTR gene.” To learn more about cystic fibrosis, click here: https://bit.ly/1QltnFs Stay updated on all the…
In this video by LifeCenterOH, meet Tonya. She knew living with cystic fibrosis meant she would one day possibly need a lung transplant. When the time came and she got the call, it was the scariest moment of her life. Thanks to Adam, her donor, she can breathe today. He…
According to the Mirror UK,  an 8 year-old-boy with cystic fibrosis saw his lung function improve after taking up playing the bagpipes. Vincent Forkner discovered his passion for playing bagpipes after his mum said he became “obsessed” with all things Scottish. He’s been learning to play the pipes with the…
Some patients suffering with CF are celebrities or became celebrities due to their fight against the disease. Learn more about Charles Michael Duke and his Wait for a Lung Transplant. In this video by Alt Shift X watch “a visual explanation of lung transplants.” Learn more about cystic…
Ian Ross Pettigrew, the Hamilton, Ontario-based photographer and the creator of the Salty Girls photo project and book of the same name, is carrying on with the next stage of his project: capturing images of people living with cystic fibrosis (CF). Salty Kids will containing a gallery of images of children…
In this Cystic Fibrosis Canada short documentary, “CF Champion Tara Bourque is sharing her journey living with cystic fibrosis.” “It’s kind of surreal to see people supporting your cause, because essentially they’re supporting your life.” – Tara Bourque To learn more about cystic fibrosis, click here:…
Last week’s hot topic on Cystic Fibrosis was ‘Salty Kids’ to Capture Challenges of Children and Families Living with Cystic Fibrosis written by Charles Moore. The article is focused on Ian Ross Pettigrew, the Hamilton, Ontario-based photographer and the creator of the ‘Salty Girls’ photo project and book of the same name,…
Watch this video to see  Morgan Grindstaff’s (Cystik1) six month update on his Orkambi experience. Read the latest Orkambi news here: https://bit.ly/1RlPwnh…
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