Sunday, July 24, 2011

Cystic Fibrosis Classic - "Breathe"

This song has become a classic in CF related music. "Breathe" was written by Matt Scales and is performed in this video by three singers with cystic fibrosis - Tess, Josh and Rose. Matt lost his life to cystic fibrosis in 2007. He was 27 years old.

The three videos include interviews with the singers, the making of the "Breathe" video and the performance.




The Making of "Breathe"




Interviews with the Singers of "Breathe"



Cystic Fibrosis Resources

Sunday, July 17, 2011

CF for New Parents, Friends or Family

Parents, children and cystic fibrosis professionals from the Children's Hospital at Westmead's Cystic Fibrosis Clinic talk about life with CF. The information is simple but comprehensive making it a great video for families with a child newly diagnosed with CF or friends and family who may not know much about cystic fibrosis. The video explains the basics about CF genetics, what cystic fibrosis is and some of the treatments needed.

If you know of any useful online resources for parents who have just had a child diagnosed with cystic fibrosis (or family and friends) feel free to let us know in the comments :)




Cystic Fibrosis Resources

Saturday, July 9, 2011

Cystic Fibrosis Author Leah Orr

A short documentary about Leah Orr the author of two children's books about cystic fibrosis - "Kyle's First Crush" and "Kyle's First Playdate". Leah's daughter Ashley has cystic fibrosis.

"Upon learning that her daughter was diagnosed with Cystic Fibrosis (while still in the womb) Orr knew she wanted to do something special. With some input from her mother and three daughters, it was decided that she'd write books to benefit the Cystic Fibrosis (CF) Foundation."

                                            From the Amazon Leah Orr Biography Page


You can also read Leah's story in the Cystic Fibrosis Foundation's "In the Spotlight"



Leah Orr's Books

Monday, July 4, 2011

Claire - A Cystic Fibrosis Story

Claire (6), her brother Kevin (8) and their parents talk about family life with cystic fibrosis. The video focuses on normal day-to-day life with cystic fibrosis, something which is important for awareness as CF is a 24 hours a day, 7 days a week medical condition.

If you know of other great videos showing more about normal day-to-day life with CF please share them in our comments.



Cystic Fibrosis Resources




Friday, July 1, 2011

Eva Markvoort: Blogger with CF

Eva Markvoort talks about CF, her double lung transplant, chronic rejection and hope. Eva died in 2010 at the age of 25. Her importance as a blogger lead to the CNN article Death at 25: Blogging the end of a life.

Eva, from British Columbia, Canada, became well known through her blog 65 Red Roses: Thoughts on Living with CF and the documentary about her - 65 Redroses. Her blogging name comes from the now "CF lore" story of a young child who could not pronounce cystic fibrosis - instead calling it 65 roses.





Eva's Final Video

"Power of Two" Authors - The Stenzel Twins

One of the few full feature videos (45 minutes) focusing on two cystic fibrosis authors - sisters Anabel Stenzel and Isabel Stenzel Byrnes. The sisters are the authors of The Power of Two: A Twin Triumph over Cystic Fibrosis. This is the first memoir to explore the life of twins living with cystic fibrosis and has inspired the movie - The Power of Two




Anabel Stenzel and Isabel Stenzel Byrnes' Book