Breathless for Rynah

30/04/2024

https://www.facebook.com/SACysticFibrosisAssociation/videos/2774771029488277/

16/01/2024

03/11/2023

https://fb.watch/o5dG6TTgKK/?mibextid=ZbWKwL

07/10/2023

After relentless campaigning for global access to lifesaving cystic fibrosis treatment, we’ve secured our third meeting with Vertex representatives next week.

At the meeting we will bring our demand for global access directly to Vertex executives. This will be a key opportunity to challenge their outrageous drug pricing and urge them to take action to save lives.

Ahead of that meeting, it’s vital that Vertex feel the pressure - can you help by writing to Vertex's CEO today using our quick and easy tool? ⬇️

https://actionnetwork.org/letters/vertex-ceo-stop-denying-access-to-lifesaving-cystic-fibrosis-treatment

To send your email, here's what you have to do:

Fill in the form with your name, email address, postcode & country

Click the "start writing" button

You'll then see a template email - you can edit it to add in your own story if you want to

Then click "send letter" and your email will be sent directly to Vertex's CEO!

Let’s send a message so loud that Vertex cannot ignore it. Every CF patient, everywhere has the right to breathe!

Just Treatment

09/07/2023

Update on our "Breath of Life Art" fundraising initiative.

We have been blown away by all the support. From original art orders to print orders to big cash donations...your generosity has just been amazing! Thank you to each and every one. We have reached our goal for one box of Trixacar!

For all those who have ordered, thank you for your patience while we finalise the logistics. We will be sending out orders in the coming week.

For those interested in viewing her art, please visit www.breathoflifeart.org - if on mobile, make sure to scroll down to see the artwork. More artworks coming soon.

10/05/2023

05/05/2023

Stream & Download OneRepublic’s latest album “Human”: https://OneRepublic.lnk.to/HumanListen to OneRepublic:Spotify: http://smarturl.it/1RSpotify Apple Music...

04/05/2023

Cystic Fibrosis (CF), is an inherited genetic disease that affects a number of organs in the body, primarily the lungs and pancreas by clogging them with thick and sticky mucus.

04/05/2023

: The “65 Roses” story dates back to 1965 when an observant 4-year-old, hearing the name of his disease for the first time, pronounced cystic fibrosis as "65 Roses."

04/05/2023

Individuals with cystic fibrosis are strongly advised to maintain a distance of at least six feet from one another.

This measure is due to the risk of bacterial cross-contamination, such as the transmission of the Burkholderia cepacia bacteria, which only affects individuals with cystic fibrosis. This bacterium poses no threat to a healthy individual, but it can have devastating effects on the lungs for someone with cystic fibrosis.

You may know the film "Five Feet Apart" depicts two cystic fibrosis patients who must adhere to this precaution but choose to "take back one foot".