A study in cells of CF patients with F508del mutation found ARINA-1 may be better than current options for clearing mucus, especially in combo with Orkambi. Learn more here.

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A real-world study of Orkambi’s use by 827 patients, including those kept from trials, supported its broad label based on lung function and weight gains. Click here to learn more.

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Rage Biotech, building on research done at Australian universities, will focus on a protein that amplifies inflammation to treat inflammatory lung diseases. Read more about this research here.

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Mutations that cause P. aeruginosa to lose motility are linked to higher production of complex sugar molecules involved in biofilm formation, a study says. Find out more here.

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Women caring for their children with cystic fibrosis express greater anxiety related to COVID-19 than the young patients themselves, a survey found. Read the full story here.

Do these findings surprise you? Why or why not?

Kaftrio (ivacaftor/tezacaftor/elexacaftor) will be available in England as soon as the medication is approved by the European Commission. Click here to learn more.

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A survey found cystic fibrosis patients using NuvoAir’s home monitoring system made better use of telemedicine and needed fewer in-person doctor visits. Click here to read more.

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Alexion Charitable Foundation has awarded $1.1 million to NORD and Global Genes to support rare disease patients amid the COVID-19 pandemic. Read the full story here.

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Enrollment has resumed in Eloxx’s trial of ELX-02 for CF in Israel and Europe — but not in the U.S. — after being suspended amid the COVID-19 crisis. Click here to learn more.

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4D Molecular Therapeutics will receive up to $14 million from the CFF to support the development of a customized gene carrier. Click here to learn more.

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Most people in the U.K. are unaware of the challenges faced by people with CF, according to results of a poll commissioned by the Cystic Fibrosis Trust. Read the full story here.

Does this surprise you? Why or why not?

Exposure to second-hand smoke is linked to changes in levels of metabolites and activation of signaling pathways that enhance inflammation. Read more here.

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The Black Women’s Health Imperative has created a Rare Disease Diversity Coalition focused on reducing racial disparities in the rare disease community. Read more about it here.

What are some specific issues you would like the coalition to address?

The European Commission has approved Kalydeco (ivacaftor) to treat children and adolescents with CF who carry the R117H mutation in the CFTR gene. Read more here.

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Thousands of people with cystic fibrosis in England over the age of six will soon be equipped with digital home spirometry kits. Read more here.

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A study shows that the mobile app MyCyFAPP, which helps patients manage PERT regimens, can improve the quality of life of children with CF with severe GI symptom. Click here to read the full story.

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Lara Govendo believes that vulnerability and unity are key to overcoming struggles. Click here to read more from Lara.

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International Biophysics and the Colton Underwood Legacy Foundation are partnering to deliver the AffloVest to Benjamin Clackum as part of the Legacy Project. Learn more about the project here.

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Investigational treatment Encala is safe, well tolerated, and increased fat absorption in patients with CF with pancreatic insufficiency, a trial analysis shows. Click here to read more.

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Oxford Hospitals Charity has purchased and delivered machines able to measure lung function at home to 20 young people with in the U.K. Read the full story here.

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People with cystic fibrosis (CF) have higher levels of DNA from common microbes that cause CF-related infections circulating in their blood, a study found. Read more here.

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In addition to restoring CFTR function, Orkambi and Symdeko significantly eased the excessive inflammation that damages lungs of people with CF, study reports. Click here to learn more.

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Click here to learn more about a four-part video series called “Sound Good?”, written and produced by man with cystic fibrosis who had double-lung transplants.

Have you watched these videos? What do you think of this man’s story?

Lara Govendo believes that CF Awareness Month must move beyond sharing factoids and into a dialogue in order for the world to deeply understand how CF changes people. Click here to find out what she means.

Do you agree with Lara? Why or why not?

Researchers have identified how trefoil proteins bind to sugars in mucin glycoproteins, thickening mucus in lungs of people with cystic fibrosis and other ills. Learn more about this research here.

Do you have any questions about these findings?

The COVID-19 pandemic has turned Cystic Fibrosis Foundation activities into virtual events this May, with an emphasis on patient stories and education. Click here to learn more about this year’s campaign.

How have you been advocating for CF this month? How did the global pandemic impact your plans?

CFF is sponsoring free access to Beam, an online exercise platform with live and on-demand classes tailored for cystic fibrosis patients, through Labor Day. Learn more about Beam and how you can access it for free here.

Will you take advantage of this offer?

Click here to read a report from ICER suggesting that Trikafta provides substantial benefit over current CF therapies, but that its cost is still too high.

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AzurRx BioPharma has been cleared to conduct its Phase 2b OPTION 2 trial evaluating MS1819 at Therapeutics Development Network (TDN) clinical sites. Read the rest of the story here.

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Click here to read an announcement from FFF Enterprises and BioNews Services about their plan to bring next-generation solutions to the rare and chronic disease clinical trial process.

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With stay-at-home orders in place due to the COVID-19 pandemic, the use of telemedicine to conduct doctor’s appointments and checkups is on the rise. Learn more here.

Have you ever tried telemedicine? Do you think it is a good alternative to face-to-face appointments?

Staphylococcus aureus persists long term in the airways of patients with cystic fibrosis, but its population is influenced by age and antibiotics, a study says. Learn more here.

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Delpharm will manufacture MS1819 using enteric (slower dissolving) capsules for a Phase 2b trial in CF patients with exocrine pancreatic insufficiency. Read more here.

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Delivering nutrients through dialysis could help people with co-occurring cystic fibrosis and kidney disease meet nutritional requirements, a report shows. Read more here.

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As patients with pre-existing lung diseases are particularly vulnerable to coronavirus (COVID-19) infection, one medical expert has put together a list of preventative measures that can help keep people with CF safe. Check it out here.

Did you find these guidelines helpful?

A West Virginia University graduate student is carrying out a study to assess whether teenagers with CF are meeting their nutrition requirements. Read more about the project here.

Do you track your nutrition? Do you think you are meeting your daily nutritional requirements?

Laura Bonnell, a mother of two daughters with CF, founded a charity that provides financial assistance and scholarships to cystic fibrosis patients in need. Learn more about the charity and its work here.

What other charities are doing great work on behalf of the CF community?

A new variation of the gene editing technology CRISPR-Cas9 corrected mutations in the CFTR gene in stem cells from CF patients, a study found. Read more here.

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Vertex Pharmaceuticals said the worldwide COVID-19 outbreak has not affected its supply chain or its 2020 business outlook. Read more here.

Are you worried about being able to access healthcare or treatments because of COVID-19?

Click here to read Bailey Vincent’s column about how her CF presents differently than in other patients, and how that impacts how people understand her disease.

Can you relate? Do you think your CF presents “typically” or not?

A student-developed video game aimed at improving young patients’ adherence to physiotherapy is being tested in the UK. Read more about it here.

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The Cystic Fibrosis Foundation has awarded up to $5 million to Armata Pharmaceuticals to advance the development AP-PA02 to a Phase 1b/2 clinical trial. Read more about it here.

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Despite constraints due to the coronavirus pandemic, the Paris-based IRDiRC continues efforts for 1,000 new therapies and better rare disease care by 2027. Read more about it here.

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A study found long-term health benefits for azithromycin in slowing the decline of lung function in CF patients infected with Pseudomonas aeruginosa. Read more about it here.

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Columnist Wendy Caroline shares her unique perspective on the risks of COVID-19 as a person living with CF and a businesswoman. Read more from Wendy here.

Can you relate to what Wendy shares?

A donation-based emergency fund has been launched to help CF families pay for food and medication while they are not working due to the COVID-19 crisis. Read more about it here.

How have the COVID-19 affected you? Is it taking a toll on your financial wealth already?

While examining his own mental health struggles, columnist Tré LaRosa breaks down barriers to open discourse about depression and anxiety. Click here to read more from Tré.

How often do you talk about your mental health? Who do you feel most comfortable opening up to?

AB569, Arch Biopartners’ candidate for bacterial infections in CF and other respiratory diseases, killed bacteria in cell assays and in mice, a study found. Read more about it here.

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Liver ultrasound can help identify children with cystic fibrosis who are at higher risk of developing liver disease, a new study shows. Click here to read more.

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The passage of time can result in changes both good and bad. Columnist Ella Balasa reflects on health improvements and the inevitability of the unknown. Read here.

How do you deal with changes?