March Media Roundup

The MHRA gives approval for new modulator medicine 

This month, the Medicines and Healthcare products Regulatory Agency (MHRA) approved the once-daily triple modulator, Alyftrek - saying it is safe and effective for eligible people. It will now be assessed by the National Institute for Health and Care Excellence (NICE), to decide if it will be made available on the NHS. 

Our Chief Executive David Ramsden said “Today’s MHRA approval is another important step in making sure as many people with CF as possible can benefit from the best available treatments.

We now hope that NICE will move quickly to complete its assessment of the medicine to enable it to be prescribed on the NHS.

Today is good news, but we never forget that these medicines are not a cure, and do not work for some people. Cystic Fibrosis Trust will not stop until everyone with CF can live a life that’s not limited by their condition." 

You can read the article in the Express here and also on our website. 

Our Trustee Sophie completes record-breaking Atlantic row challenge

The Trust would like to congratulate our Trustee, Sophie, and her crewmates Janine, Polly, and Miyah for completing their incredible Atlantic row challenge.

Rowing 3,200-miles from Lanzarote to Antigua, they have broken two world records - Sophie being the first person with CF to row an ocean, and Janine, 70, being the oldest woman to row an ocean. 

They have so far raised over £20,000 for the Trust, Paul Sartori Hospice at Home, and Emily’s Entourage.

You can read more about the story and make a donation here.

Dogs help to detect bacteria in people with cystic fibrosis  

Professor Jane Davies spoke with The Observer about antimicrobial resistance (AMR) and her Innovation Hub at Imperial College, where her team are developing a project using dogs to sniff out Pseudomonas in people with cystic fibrosis. 

Professor Davies said: “We showed that in laboratory settings dogs can detect Pseudomonas in samples,” and “Now we want to expand that work and have just been given funding from the medical charities LifeArc and Cystic Fibrosis Trust to ramp up our collaboration with Medical Detection Dogs so that, for the first time, we may be able to train dogs to detect Pseudomonas on patients’ skin, in their urine or in their clothing.”

You can read the story here. 

Supporters runs this year’s London Marathon 

Our long-standing supporter, Liam, is training to take on the London Marathon again this year. 

Liam said: “I have to keep going until cystic fibrosis stands for ‘cure found’,” he added “I’m fighting for everyone living with this condition, especially the 10% who still don’t have lifesaving drugs.” 

You can read the full article here. 

Our supporter Finlay, who has CF, is also preparing to run the London Marathon and spoke to BBC News Bristol. He said: “I just really want to not only help myself, but also inspire people." 

The Trust would like to say a huge thank you to all of our #TeamCF runners, and wish them good luck on marathon day! 

Watch the March Media Roundup video here.