Cystic Fibrosis News Moderator

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.

What do you think about this study and its findings?

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.

What do you think about this study and its findings?

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.

What do you think about this study and its findings?

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?