Kalydeco Changes Lives

YouTube Channel 

What is it?

The Kalydeco_Changes_Lives YouTube Channel has been created as a forum where community members can share poignant messages about the need for Kalydeco.

Who can contribute?

This is a standard YouTube Channel managed by Cystic Fibrosis Victoria, however it is not solely for the use of Victorians.  We hope to receive contributions from people living around Australia and overseas.

What is its purpose?

This site has been envisaged as a 21st century alternative to writing a letter to the editor or to your local member of parliament.  We believe that a collection of simple, personal heartfelt messages from the people directly affected will form an extremely persuasive message. Through the power of the internet and social media we hope this will help provide the final push necessary to make relevant parties expedite the listing of Kalydeco on the PBS.

How does it work?

We are asking both those that have already experienced the benefits of Kalydeco and those with a G551D mutation who are anxiously waiting for access to the drug to produce a 30 sec video using a camera phone or ipad.  
The goal is not to have fancy or slick edited pieces, but rather very real and raw footage where the person concerned simply talks to the camera.  All we need to see is their head and shoulders.  It doesn’t even need to be the full 30 secs, 15 secs will be fine.
We are NOT looking for detailed life stories or family histories, just simple statements that convey the reality of living with CF and how Kalydeco has changed or could change someone’s life.

Possible messages

Since starting Kalydeco I have been able to work full-time
Since starting Kalydeco I have been able to maintain a healthy weight of….
Since starting Kalydeco I no longer need to spend weeks in hospital every few months.
Since starting Kalydeco I no longer need a lung transplant.
Since starting Kalydeco I have opened a superannuation account
Since starting Kalydeco I no longer worry about not fulfilling my dreams before I die

If I could take Kalydeco my dreams of ……. could become realities
If I could take Kalydeco I would not need to spend school holidays in hospital
If I could take Kalydeco I would be able to keep up with my friends without becoming out of breathIf I could take Kalydeco I could grow up to be a ……
If I could take Kalydeco I could travel and see the worldIf I could take Kalydeco I wouldn’t be afraid of the consequences of a catching a cold 
If I could take Kalydeco I wouldn’t mind doing my daily physio as I know the chance of my lungs staying healthy is high
If I could take Kalydeco I might be able to have children and grandchildren and be around to see them grow up.

How do I post my video?

You do not need to be a computer or social media wizard to include your video on this site.  All you need to know is how to email.

Once you have finished filming just attach the video file to an email. 
Include a Subject in the email (like “Kalydeco changed Sally’s life”) and that will become the title of your video on our Channel.
Then send it to m9m15ep231mi@m.youtube.com Voila!  It’s done.  

Sometimes it can take a few minutes to load but shortly after sending the email you should be able to view it on www.youtube.com/KalydecoChangesLives.  
After you’ve confirmed it’s working share this address with family and friends, through email, Facebook, Twitter, etc to spread the word.

What are the rules/recommendations?

Please be as honest and truthful in your statements.  It is important that all the content on this site is seen as credible.
Do not feel obliged to bear your sole.  Just be as open as you feel comfortable being.
If you are under the age of 18 please seek your parents’ permission before posting anything on this site.
Cystic Fibrosis Victoria will be monitoring this site closely and videos containing inappropriate language or images will be removed from the site.

What are the next steps?

Once this site has a number of videos uploaded we will begin an extensive awareness campaign, where footage will be shared with various power brokers as well as the media. 
We also hope to use some of the footage to make a single combined video that can be used in other elements of the campaign to get Kalydeco listed on the PBS as soon as possible.

If you have any questions about this site please email: communications@cfv.org.au

Download these instructions as a PDF