Evolving Toward Becoming Visible
Doctors diagnosed me with cystic fibrosis (CF) at 18 months old and I recently turned 29. It’s safe to say I’ve never known a ... Read more
Updates
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Becoming Visible by Elizabeth Rogers, Columns Evolving Toward Becoming Visible
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cystic fibrosis New Gene Therapy Strategy May Reverse Effects of Disease-related Mutations, Study Shows
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Columns, Work that Works - a Column by Elly Aylwin-Foster Taking Sick Leave Shouldn’t Cause Low Self-esteem
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cystic fibrosis NIH Funds Fight Against CF-associated Antibiotic Resistant Bacteria
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cystic fibrosis Vienna to Host RARE2019 Meeting on Rare Diseases
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cystic fibrosis Increased Pulmonary Flares and IgG Antibody Levels Elevate Risk of Joint Disease in CF, Study Says
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Columns, Victorious - a Column by Brad Dell Brad Dell: The Man Without Fear, Almost
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cystic fibrosis, News Hyperbaric Oxygen Treatment May Make Antiobiotics More Effective Against P. aeruginosa Infections, Study Says
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Columns, Mutations & Conversations - a Column by Tré LaRosa CF Forces Me to Have a Different Long-term Outlook
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cystic fibrosis, News Vertex Plans to Ask for Extended Approval of Symkevi in Europe for CF Children Ages 6-11
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cystic fibrosis, News CFF Plans Feb. 28 ‘ResearchCon’ Virtual Event for Cystic Fibrosis Patients
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cystic fibrosis, News Cisco and Emily’s Hope Raise Over $1 Million in CFF’s Great Strides Campaign
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Columns, This Lung Life - a Column by Ella Balasa Sharing Life with CF on Social Media
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Columns, Modern CF Mama - a Column by Janeil Whitworth An Open Letter to the ‘How Are You Feeling?’ Folks
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cystic fibrosis, News ‘Five Feet Apart,’ Film About Teens with CF and Young Love, Teams Up with Fashion Retailer rue21
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Columns, Victorious - a Column by Brad Dell A Life Intimate with Death Is Not a Life Deprived of Beauty
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cystic fibrosis, News Tobramycin Fights P. aeruginosa Bacteria That Impair CFTR Function, Study Says
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Columns, Path Unknown - a Column by Wendy Caroline It’s Hard to Be Graceful While Becoming Disabled
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Columns, Mutations & Conversations - a Column by Tré LaRosa My Family Had 2 Children with CF
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cystic fibrosis Patients, Family and Friends to Take Part in Variety of Rare Disease Day Events Worldwide
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cystic fibrosis, News New company Recida to Focus on Developing Therapies Against Antibiotic-resistant Bacteria
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Social Clips CF Family Friday: The Gaudenzi Mother-Daughter Duo
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cystic fibrosis, News Enrollment Info Updated on Phase 3 Trial Assessing AeroVanc for MRSA Infection in CF
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cystic fibrosis Medical Marijuana ‘Can Help Everyone,’ Says Director at Maryland Cannabis Facility
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cystic fibrosis, News Research Partners Work to Simplify, Improve Assessment of Lungs for Transplant
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Columns, Victorious - a Column by Brad Dell My CF Symptoms Have Made Easy Bullying Targets
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cystic fibrosis, News Utah’s Somer Love Battles CF with Kindness and Strength
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cystic fibrosis Poor Diet Quality Linked to Body Fat Distribution in Adults with Cystic Fibrosis, Study Shows
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cystic fibrosis Group Publishes Guidelines for Home Oxygen Therapy Use in Children
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Columns, Mutations & Conversations - a Column by Tré LaRosa My Thoughts on Exercise and CF
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cystic fibrosis Hypertonic Saline Activates Neurons that Contribute to Airway Surface Liquid Production in CF, Study Suggests
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Columns, Work that Works - a Column by Elly Aylwin-Foster Tried and True Tactics to Stay Healthy in the Office
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cystic fibrosis, News Cystic Fibrosis Canada Holding 30th Annual Golf Fundraiser Event June 17 in Calgary
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cystic fibrosis, News Link Found Between P. aeruginosa Infection and Disease Severity in CF Patients, Study Reports
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Columns, Victorious - a Column by Brad Dell Children Teach Us How to Love People with Health Conditions and Disabilities
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cystic fibrosis, News Toddlers Age 1-2 With CF Can Now Be Treated With Kalydeco in Canada
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Columns, Mutations & Conversations - a Column by Tré LaRosa The Burden of Care in the Life of a CF Patient
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cystic fibrosis, News Personalized Nutrition Programs May Help Improve Outcomes for CF Patients, Survey Suggests
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cystic fibrosis, News CF Foundation Gives $4.5M to Expedite Talee Bio’s Development of Two Gene Therapy Candidates
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Columns, Work that Works - a Column by Elly Aylwin-Foster Making Dreams Come True in Uncertain Times
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cystic fibrosis, News European Research Team Granted €6.8M to Develop Non-viral Gene Therapy System
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cystic fibrosis, News Orkambi Approved in Europe for Younger CF Patients with F508del Mutations
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Columns, Victorious - a Column by Brad Dell What Storm Drain Adventures Taught Me About CF Treatments
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cystic fibrosis, News CF Patients Navigate Increasingly Complex Health Insurance Quagmire
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cystic fibrosis, News Woman’s Lawsuit Put Emphasis on ‘Urgency’ in Deciding Organ Transplants in US
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Columns, Mutations & Conversations - a Column by Tré LaRosa The Diverse Spectrum of Health Across the CF Community
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cystic fibrosis, News Non-invasive Ventilation Improves Lung Function in CF Patients But Not Survival, Study Finds
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Columns, Work that Works - a Column by Elly Aylwin-Foster My Search for Happier, Healthier Work
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cystic fibrosis, News Phase 2 Trial Testing SPI-1005 for Ototoxicity in CF Patients Moving Forward
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cystic fibrosis, News CFF’s Preston Campbell: 2019 is a ‘Pivotal Year’ for CF Therapies
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Columns, Victorious - a Column by Brad Dell Transplant Is Horrendous in the Beginning — You’re Not Abnormal
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cystic fibrosis, News Immunotherapy May Be Promising Strategy to Treat Chronic Infections of P. aeruginosa in CF Patients
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Columns, Mutations & Conversations - a Column by Tré LaRosa Let’s Use the Cystic Fibrosis News Today Forums for Empowerment
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cystic fibrosis, News Eluforsen Improves CFTR Protein Function in CF Patients with F508del Mutations, Phase 1 Trial Shows
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cystic fibrosis, News WHO Approves Ensifentrine as Name for Potential Inhaled Treatment Now in Clinical Trials
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cystic fibrosis, News New Inhaled Carrier May Work for CF mRNA Therapy, Mouse Study Finds
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cystic fibrosis Alcresta’s Relizorb Given Medicare/Medicaid Billing Code for Easier Claims
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Columns, Victorious - a Column by Brad Dell My Trip to Hawaii Symbolizes My Victory Over Death by CF
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cystic fibrosis, News Vertex and Arbor Biotechnologies Collaborating to Develop Cystic Fibrosis Gene Therapies
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Columns, Mutations & Conversations - a Column by Tré LaRosa Empowering Children by Educating Them About Their CF
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cystic fibrosis Claire’s Place Foundation Grants to Help CF Families Reaches $1 Million Milestone
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cystic fibrosis Vertex to Request Review of Orkambi, Symkevi Plus Kalydeco for Public Funding in Scotland
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News Using Food as Medicine to Manage CF: A Nutritionist’s View
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cystic fibrosis, News AzurRx Starts Phase 2 Clinical Trial Testing MS1819-SD in CF Patients With EPI
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cystic fibrosis Rising Healthcare Costs Strain EU Budgets Even as New Therapies Flourish
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cystic fibrosis, News Gene Expression Patterns in Blood May Lead to Patient-tailored CF Treatment, Study Finds
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cystic fibrosis, News CFF Aids Development of NO-based Therapy, BIOC51, for Resistant Bacteria, Vast Therapeutics Says
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cystic fibrosis, News New Dual-antibiotic Powder Inhalation More Effective Against Drug-resistant Bacteria, Researchers Say
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Columns, Mutations & Conversations - a Column by Tré LaRosa How Should We Approach Milestones While Grieving?
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cystic fibrosis, News Health Canada Approves Orkambi to Treat Preschoolers with Two F508del Mutations
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cystic fibrosis, News Aridis Enrolling CF Patients to Test AR-501 in Chronic Lung Infections
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cystic fibrosis, News Specific Sweat Test Better Detects Kalydeco’s Effects on CFTR Function, Study Suggests
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Columns, Modern CF Mama - a Column by Janeil Whitworth Your CF Partner Can Help Make You Healthier
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cystic fibrosis, News Young CF Patients Deem Wrist-worn Devices Acceptable for Monitoring Physical Activity, Study Finds
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cystic fibrosis, News Higher Interleukin-7 Serum Levels Could be Biomarker for CF, Study Suggests
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Columns, Mutations & Conversations - a Column by Tré LaRosa People with Rare Diseases Are Humans, Not Commodities
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cystic fibrosis, News Handheld Wireless Home Spirometer Could Transform CF Monitoring, Pilot Study Suggests
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cystic fibrosis, News Aridis to Start Phase 1/2a Trial for Inhalable Antibacterial Therapy AR-501 in CF Patients
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cystic fibrosis, News Inhaled Hypertonic Saline Improves Lung Health in Preschoolers with CF, Study Shows
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cystic fibrosis, News CF Patients Benefit from Virtual Learning, New Educational Programs
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Columns, Victorious - a Column by Brad Dell The Toon Trauma Triggers
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cystic fibrosis, News Mastercard Executives Lead the Way in Growing Relationship with CF Foundation
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Columns, Mutations & Conversations - a Column by Tré LaRosa For the First Time, I’m Feeling Thankless This Holiday Season
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cystic fibrosis, News Researchers Working on Vaccine Against P. aeruginosa Before Infection Sets In
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cystic fibrosis, News European Union Expands Kalydeco’s Approval to Certain CF Patients Ages 1-2
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cystic fibrosis, News Triple Combo with VX-659 Improves Lung Function in CF Patients with F508del Mutation, Phase 3 Trials Show
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Columns, This Lung Life - a Column by Ella Balasa As Both Patient and Scientist, I’m Putting Nature’s Medicine to the Test
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cystic fibrosis, News Study Reveals How Cystic Fibrosis Affects Young Women’s Sexual Health
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cystic fibrosis, News GEn1E to Explore MUC1-ED to Prevent P. Aeruginosa Infections in CF
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Social Clips Cystic Fibrosis Care in Mexico and Brazil: Two Interviews
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Columns, Mutations & Conversations - a Column by Tré LaRosa Thanking the Care Teams of Chronic Disease Patients
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cystic fibrosis, News P. aeruginosa Toxin May Be Reason for Single Strains Found in CF Infections, Study Reports
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Columns, Modern CF Mama - a Column by Janeil Whitworth Giving Thanks for the Positive Things CF Has Brought
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Columns, Victorious - a Column by Brad Dell The Powerless Car and the Powerful Dad
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cystic fibrosis, News New Tissue-specific Delivery of CRISPR/Cas9 Aided by Moth Virus and Magnets, Study Shows
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Columns, Mutations & Conversations - a Column by Tré LaRosa The Bittersweet Downside of CFTR Modulators
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cystic fibrosis, News Orkambi Closer to Being Approved in Europe to Treat Children Ages 2-5 With Cystic Fibrosis
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cystic fibrosis, News New Test of Mucus Properties May Help with Coughing and Airway Clearance in CF
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cystic fibrosis, News Ultrasound Predicts Advanced Liver Disease in CF Patients, According to Clinical Trial Data
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New Gene Therapy Strategy May Reverse Effects of Disease-related Mutations, Study Shows
A new strategy to genetically prevent disease-related mutations from occurring shows the potential to treat several genetic diseases, including cystic fibrosis (CF), a study ... Read more -
Taking Sick Leave Shouldn’t Cause Low Self-esteem
During these last two weeks, I’ve felt the sickest I have in years. I was admitted into the hospital for a bronchoscopy, intravenous antibiotics, ... Read more -
NIH Funds Fight Against CF-associated Antibiotic Resistant Bacteria
Researchers at Case Western Reserve University School of Medicine have received a $3.34 million grant from the National Institutes of Health (NIH) to develop a ... Read more -
Vienna to Host RARE2019 Meeting on Rare Diseases
About 100 scientists, researchers, pharmaceutical executives, and others will converge on Austria’s capital city early next month for the 2nd International Congress on Advanced ... Read more
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Increased Pulmonary Flares and IgG Antibody Levels Elevate Risk of Joint Disease in CF, Study Says
Joint disease, or arthropathy, is common among people with cystic fibrosis (CF), and more ... -
Brad Dell: The Man Without Fear, Almost
Imagine how much easier cystic fibrosis (CF) would be if we didn’t have fears. ... -
Hyperbaric Oxygen Treatment May Make Antiobiotics More Effective Against P. aeruginosa Infections, Study Says
Exposing cystic fibrosis (CF) patients to high levels of oxygen through hyperbaric oxygen treatment may make Pseudomonas ... -
CF Forces Me to Have a Different Long-term Outlook
In high school, I aspired to be a pulmonologist for obvious reasons: I wanted ... -
Vertex Plans to Ask for Extended Approval of Symkevi in Europe for CF Children Ages 6-11
Results from a Phase 3 trial demonstrate that Symkevi (tezacaftor and ivacaftor combo), known ... -
CFF Plans Feb. 28 ‘ResearchCon’ Virtual Event for Cystic Fibrosis Patients
Later this month, the Cystic Fibrosis Foundation (CFF) will host ResearchCon, its first virtual event ...
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Cisco and Emily’s Hope Raise Over $1 Million in CFF’s Great Strides Campaign
Emily’s Hope and Cisco have raised more than $1 million as part of Great Strides ... -
Sharing Life with CF on Social Media
“Ella, you were at a bar?! I thought you were going to the hospital?” ... -
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It’s Hard to Be Graceful While Becoming Disabled
Growing up with a terminal disease, it was not a secret that one day ... -
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CF Family Friday: The Gaudenzi Mother-Daughter Duo
The cystic fibrosis (CF) journey necessitates numerous partnerships, and while a medical partnership is ... -
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Research Partners Work to Simplify, Improve Assessment of Lungs for Transplant
SQI Diagnostics announced two new research agreements with research hospital University Health Network (UHN), ... -
My CF Symptoms Have Made Easy Bullying Targets
Editor’s note: This column discusses suicide. Sometimes, the day is raw, a knife grinding round and ... -
Utah’s Somer Love Battles CF with Kindness and Strength
Somer Love is sitting at her favorite local hangout, the Landmark Grill in suburban ... -
Poor Diet Quality Linked to Body Fat Distribution in Adults with Cystic Fibrosis, Study Shows
Adults with cystic fibrosis, compared with healthy individuals, have poorer diet quality and increased accumulation ... -
Group Publishes Guidelines for Home Oxygen Therapy Use in Children
The American Thoracic Society (ATS) recommends the use of home oxygen therapy in children ... -
My Thoughts on Exercise and CF
It’s hard to understate the benefits of exercise for healthy people, let alone people ... -
Hypertonic Saline Activates Neurons that Contribute to Airway Surface Liquid Production in CF, Study Suggests
Stimulation of neurons accounts for approximately half of the beneficial production of airway surface ... -
Tried and True Tactics to Stay Healthy in the Office
“Alcohol gel like it’s going out of fashion.” “Giving the stink eye to the ... -
Cystic Fibrosis Canada Holding 30th Annual Golf Fundraiser Event June 17 in Calgary
Cystic Fibrosis Canada — Calgary and Southern Alberta Chapter will hold the 30th Annual 65 ... -
Link Found Between P. aeruginosa Infection and Disease Severity in CF Patients, Study Reports
Patients with cystic fibrosis (CF) whose lungs have never been colonized by the Pseudomonas aeruginosa bacterium ... -
Children Teach Us How to Love People with Health Conditions and Disabilities
A running joke among my friends is that “Brad hates kids.” Maybe I did. I ... -
Toddlers Age 1-2 With CF Can Now Be Treated With Kalydeco in Canada
Health Canada has approved the use of Kalydeco (ivacaftor) in toddlers age 1-2 years with ... -
The Burden of Care in the Life of a CF Patient
A couple of months ago, I did back-of-the-envelope calculations on basic CF stats. Here’s ... -
Personalized Nutrition Programs May Help Improve Outcomes for CF Patients, Survey Suggests
New personalized strategies that can address the nutritional needs of cystic fibrosis patients may ... -
CF Foundation Gives $4.5M to Expedite Talee Bio’s Development of Two Gene Therapy Candidates
The Cystic Fibrosis Foundation (CFF) will fund the preclinical development of two gene therapy candidates, ... -
Making Dreams Come True in Uncertain Times
Last week, I introduced this column to share my experiences while working with cystic ... -
European Research Team Granted €6.8M to Develop Non-viral Gene Therapy System
The Horizon 2020 research and innovation program of the European Union granted €6.8 million ... -
Orkambi Approved in Europe for Younger CF Patients with F508del Mutations
The European Commission has approved the label extension of Orkambi (lumacaftor/ivacaftor) for the treatment ...