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

Beautiful - Cystic Fibrosis Awareness

A beautiful video made by a mum for Great Strides 2011. Her daughter is also included in the video amongst the faces of many beautiful children who have cystic fibrosis.

Our children are beautiful.

They are meant for so much more than all of this.

They are beautiful.

They are treasured.

They are sacred.

                                                          From the family's blog (now ceased)

Cystic Fibrosis Resources

Team Asher - Cystic Fibrosis Awareness

A very emotionally powerful cystic fibrosis video made for Great Strides 2009 (the section with the teddy bear is especially poignant). It's another example of the fabulous awareness videos parents make.

Asher was diagnosed with cystic fibrosis as a newborn. Their second (and also gorgeous) son Paxon was born with both cystic fibrosis and another genetic disorder. He died at 11 days of age.

Visit the Team Asher Blog and the Team Asher Facebook Page





Cystic Fibrosis Resources

Getting Nosey about CF

A cute cartoon for kids created for the Cystic Fibrosis Trust.

Oliver Dillon (12), a young actor with cystic fibrosis, provided the voice of Oli. He hopes the video will not only help children with CF to understand their condition but also enable their friends to have a better understanding of life with cystic fibrosis.

You can see a video interview with Oli on the Kent Online website
 
Overall a great cartoon for children, both with and without cystic fibrosis, and a must watch if you haven't seen it yet.

Visit Oli and Nush's Fundraising Page



Cystic Fibrosis Resources

The Cystic Fibrosis Foundation’s Dream

With the vast number of uploaded videos on the internet it can sometimes take a lot of effort to find good quality videos about cystic fibrosis. The My Dream videos from the Cystic Fibrosis Foundation would have to be my absolute favourite videos created by any CF organization. These videos are simple yet so powerful. The emotion is real rather than being scripted. I feel they provide a sense of hope without glossing over the reality of life with cystic fibrosis.

The Cystic Fibrosis Foundation explains that they "asked some of the many extraordinary people affected by this disease to share their dreams for the future." A wonderful approach I believe as something cannot become reality unless it is imagined first. It is through the creativity and imagination of researchers that better treatments and a cure will be found for CF.

There are six videos in the series - here are three of my personal favourites.

Please note: Some of these videos are quite emotionally powerful due to the inclusion of parents who have lost a child to cystic fibrosis. 

Go to the My Dream for CF page







Cystic Fibrosis Resources