Updates

September 21, 2018September 21, 2018
Dietary Flavonoids May Help in Managing CF Through Impact on Gut Bacteria, Small Study Suggests

Consuming dietary flavonoids — compounds naturally found in fruits, vegetables, chocolate, and beverages like wine and tea — may be associated with changes in gut ... Read more
September 20, 2018September 20, 2018
FDA Gives Green Light to 2 Trials for AB-PA01, Potential Therapy Against P. aeruginosa Infections

The U.S. Food and Drug Administration gave positive feedback to the design of AmpliPhi Biosciences’ two proposed clinical trials of its ... Read more
September 19, 2018September 17, 2018
Worthwhile Experiences at BreatheCon, a Virtual CF Conference

BreatheCon is a free online conference hosted by the Cystic Fibrosis Foundation (CFF) for CF patients 18 or older from across the globe to ... Read more
September 19, 2018September 19, 2018
Electronic Nose Offers Easy, Accurate Test for CF in Children, Pilot Study Finds

A new electronic nose, called Aeonose, was seen to be a feasible, accurate and easy-to-use diagnostic test for cystic fibrosis (CF) in children and ... Read more
September 18, 2018September 17, 2018
7 Ways to Cherish Your Quality of Life

Friends. Today, my message is simple. Your quality of life matters. Quality of life is integral to physical health Inevitably, you will face trials ... Read more

cystic fibrosis

Public Invited to Vote on Two AbbVie CF Student Scholarship Awards
September 12, 2018September 12, 2018
The public is invited to vote and help determine this year’s AbbVie Thriving Undergraduate and ...
Columns, Victorious - a Column by Brad Dell

The 4 Deaths that Mold Me
September 11, 2018September 7, 2018
Winter 2016-17: Sabrina Santos We called each other twins. Sabrina, like me, was a ...
cystic fibrosis, News

Two Phase 3 Trials of Vertex’s Triple Combination Therapy with VX-659 Are Fully Enrolled
September 11, 2018September 12, 2018
Vertex Pharmaceuticals has completed enrollment for two Phase 3 studies testing the triple combination therapy ...
Columns, Mutations & Conversations - a Column by Tré LaRosa

Grieving in an ‘Always Online’ World
September 10, 2018September 10, 2018
“So right now we live on borrowed time, I don’t know how long or ...
cystic fibrosis, News

Vertex and Treating CF: 3 Disease-modifying Therapies Make Leap from Lab to Patients
September 10, 2018September 10, 2018
Editor’s Note: This is the second of a four-part series looking at Vertex Pharmaceuticals and ...
Social Clips

Reminders to Those Who Mourn
September 7, 2018September 7, 2018
For many of us, being a part of the cystic fibrosis community is obligatory. ...

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Public Invited to Vote on Two AbbVie CF Student Scholarship Awards
September 12, 2018September 12, 2018
The public is invited to vote and help determine this year’s AbbVie Thriving Undergraduate and ...
The 4 Deaths that Mold Me
September 11, 2018September 7, 2018
Winter 2016-17: Sabrina Santos We called each other twins. Sabrina, like me, was a ...
Two Phase 3 Trials of Vertex’s Triple Combination Therapy with VX-659 Are Fully Enrolled
September 11, 2018September 12, 2018
Grieving in an ‘Always Online’ World
September 10, 2018September 10, 2018
Vertex and Treating CF: 3 Disease-modifying Therapies Make Leap from Lab to Patients
September 10, 2018September 10, 2018
Reminders to Those Who Mourn
September 7, 2018September 7, 2018

Reimbursement Agreement Includes Orkambi in Public Health Plan for CF Patients in Australia
September 7, 2018September 7, 2018
Beginning Oct. 1, the cystic fibrosis (CF) targeted therapy Orkambi (lumacaftor/ivacaftor) will be included ...
Australian Museum Eureka Prize Given CF Research Team for Work on Bacteria’s Spread Among Patients
September 6, 2018September 6, 2018
Vertex, Genomics Team Up in Quest for Genetics-based, Precision Medicines
September 5, 2018September 5, 2018
Vertex and Treating CF: Stepping Out on Long Road to ‘Medical History’
September 4, 2018September 4, 2018

My Hospital, That Torturous Refuge
September 4, 2018August 31, 2018
“Ahhh, so lucky! Enjoy your vacation.” Many people thought hospitalizations were times to sit ...
What People with Cystic Fibrosis Want Their Doctors to Know
August 31, 2018August 31, 2018
New Research on Pancreatic Ducts’ Formation Offers New Insights for CF
August 31, 2018August 31, 2018

cystic fibrosis, News

MRSA Difficult to Eradicate, Even With Multimodal Antibiotics, CF Study Finds
August 30, 2018August 30, 2018
Up to one month of treatment with inhaled vancomycin, the antibiotic of choice for treating most ...
Columns, Modern CF Mama - a Column by Janeil Whitworth

A Plan for a Healthier Season in Parenting
August 29, 2018August 27, 2018
This weekend, my son, wearing a tiny crown and old man suspenders, blew out ...
cystic fibrosis, News

Measuring D-Lactate in Blood May Indicate Pancreatic Insufficiency in CF Patients, Study Suggests
August 29, 2018August 29, 2018
Blood levels of D-lactate may be markers of exocrine pancreatic insufficiency (EPI) in patients ...
Columns, Victorious - a Column by Brad Dell

Disease Fatigue Is Not the Same as Laziness
August 28, 2018August 27, 2018
I come from the generation of “Netflix and chill,” except for me, it wasn’t ...
cystic fibrosis, News

CF Patients’ Response to Kalydeco Impaired by Single Variants in SLC26A9 Gene, Study Reports
August 28, 2018August 28, 2018
Single nucleotide polimorphisms (or variants), known as SNPs — the most common type of genetic ...
cystic fibrosis, News

Firms Will Test Digital Platform to Help Patients Manage CF-Related Diabetes
August 27, 2018August 27, 2018
Attain Health will partner with DarioHealth, a digital health and big data solutions company, to ...
cystic fibrosis, News

Orkambi Not Seen to Significantly Improve Blood Glucose Levels in CF Patients in Small Study
August 23, 2018August 23, 2018
Analysis of blood glucose levels in cystic fibrosis (CF) patients being treated with Orkambi ...
Columns, This Lung Life - a Column by Ella Balasa

I Have Cystic Fibrosis, and CF Has Me
August 22, 2018August 21, 2018
I hear others say “I have CF. CF doesn’t have me.” This may be ...
cystic fibrosis, News

ELITechGroup Launches Improved Macroduct Sweat Test for Cystic Fibrosis Diagnosis
August 22, 2018August 22, 2018
ELITechGroup Biomedical Systems has released a new, advanced version of its Macroduct system, called the ...
Columns, Victorious - a Column by Brad Dell

Who Runs the Ward? Women.
August 21, 2018August 20, 2018
I’ve been in sticky situations with dude doctors. With many male doctors, it’s a ...
cystic fibrosis, News

Orkambi Soon to Be Added to Public Health Plan for CF Patients in Australia
August 21, 2018August 21, 2018
Orkambi (lumacaftor/ivacaftor), a treatment for cystic fibrosis (CF) patients in Australia age 6 and ...
cystic fibrosis, News

Israeli CF Patient Advocacy Group Urges Better Access to Screening, Key Therapies
August 20, 2018August 20, 2018
When Shira Zagury joined the Cystic Fibrosis Foundation of Israel as CEO eight years ago, only ...
Social Clips

CF Mamas Discuss Pregnancy Health, Delivery, and Breastfeeding
August 17, 2018August 17, 2018
We’re back this week with part two of our CF Mamas Interview Series, this ...
News

FDA Expands Kalydeco’s Approval to 1-year-old Toddlers with Cystic Fibrosis
August 17, 2018
The U.S. Food and Drug Administration (FDA) has approved Kalydeco (ivacaftor) as the first-ever therapy ...
Columns, Note Taken - a Column by Hannah Buck

We Need to Allow Ourselves to Heal
August 16, 2018August 16, 2018
We all need to stop picking our scabs. There’s something so simple and satisfying ...
News

Stem Cell Transplant Into Airways Might Treat CF, Mouse Study Suggests
August 16, 2018August 16, 2018
A study in mice showed it is possible to transplant stem cells into the ...
News

Mutations in Genes Regulating Digestion Prevalent in CF Patients with Pancreatitis, Study Finds
August 15, 2018
In addition to mutations in the CFTR gene, cystic fibrosis (CF) patients with pancreatitis ...
Columns, Modern CF Mama - a Column by Janeil Whitworth

Identifying and Addressing 3 Barriers to Treatment Adherence
August 15, 2018August 14, 2018
Cystic fibrosis requires a complex and time-consuming treatment plan beyond what many other chronic ...

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