January 25, 2021January 21, 2021 The Long Journey of Learning to Love My Own Body I used to be ashamed about my insecurities. I believed that as a man, I was supposed to be strong. I was supposed to ... Read more
January 25, 2021January 25, 2021 Minorities in US Ineligible for CFTR Modulators Due to Poorly Studied Mutations Individuals with cystic fibrosis (CF) from racial and ethnic minority groups in the U.S. are twice as likely to be ineligible for disease-modifying therapies ... Read more
January 22, 2021January 22, 2021 NORD’s Caregiver Respite Program Continues Through Pandemic Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet ... Read more
January 22, 2021January 22, 2021 Dosing Begins in Extension Study of Yeast-derived Treatment for EPI The first two patients have been dosed in the Phase 2b OPTION 2 extension study evaluating MS1819 in treating exocrine pancreatic insufficiency (EPI) in ... Read more
January 21, 2021January 21, 2021 COVID-19 Lockdown Linked to Fewer Flares in Children in Small Study Limits placed on social interaction by the COVID‐19 pandemic appear to have led to a drop in the number of pulmonary exacerbations — periods of a ... Read more
cystic fibrosis, News Compounds Raise Kalydeco’s Efficacy, May Be Future Combo Therapy January 20, 2021January 20, 2021 Researchers boosted the activity of the cystic fibrosis transmembrane regulator (CFTR), the faulty protein ...
Columns, Life in the Grey – a Column by Bailey Anne Vincent Why I Broke the ‘6 Feet Apart’ Rule January 19, 2021January 15, 2021 Staying 6 feet apart is not new to me. It’s not new because I ...
cystic fibrosis, News CF Patients and Families Favoring Telehealth as Option for Care, Survey Finds January 19, 2021January 19, 2021 People with cystic fibrosis (CF) and their families are largely satisfied with the convenience ...
cystic fibrosis, News Bacteria in Irish Soil Seen to Block Those Tied to Chronic Lung Infections January 18, 2021January 18, 2021 A species of antibiotic-producing bacteria able to inhibit the growth of antibiotic-resistant bacteria linked ...
Columns, Valiant Voice – a Column by Lara Govendo How a Blood Donor Saved My Life January 15, 2021January 14, 2021 Hearing the words “blood transfusion” still sends chills down my spine. The emotional response ...
cystic fibrosis, News CFF Awards Up to $2M to Advance Eloxx’s Therapy ELX-02 January 15, 2021January 15, 2021 The Cystic Fibrosis Foundation (CFF) is awarding Eloxx Pharmaceuticals up to $2 million in additional ...
UK Rare Diseases Framework Opens to Improve Diagnosis, Access to Care January 14, 2021January 14, 2021 U.K. Rare Diseases Framework, a government-led approach to raising national awareness of rare disorders, ...
Cholesterol Metabolism Impaired in CF Mouse Model January 13, 2021January 13, 2021 The metabolism of cholesterol is impaired in a mouse model of cystic fibrosis, a ...
Phase 1/2 Trial to Test Phage Therapy for Chronic P. aeruginosa Infections January 12, 2021January 12, 2021
NORD Seeks Speakers for 2021 Virtual ‘Living Rare, Living Stronger’ Forum January 11, 2021January 11, 2021
Inhaled-IV Antibiotic Combo May Better Treat Acute Flares Than IV-only Mix January 7, 2021January 7, 2021 When given alongside the antibiotic Colistin (colistimethate), Cayston (aztreonam lysine), an inhaled antibiotic specifically ...
Fecal Protein Tied to Worse GI Symptoms, Quality of Life in CF Children January 6, 2021January 6, 2021
Small Study Shows Tobramycin Safely Treats Lung Infection in Infants With CF December 31, 2020December 31, 2020 Inhaled antibiotic tobramycin safely eradicated early Pseudomonas aeruginosa infection in cystic fibrosis (CF) patients younger ...
Columns, Life in the Grey – a Column by Bailey Anne Vincent I’m Already Scheduling Surgeries for Next Year December 22, 2020December 17, 2020 Today, I woke up and left for a doctor’s appointment. It was 8 a.m., ...
cystic fibrosis, News FDA Expands Labels for 3 Vertex CFTR Modulators December 22, 2020January 5, 2021 The U.S. Food and Drug Administration (FDA) has expanded the number of cystic fibrosis (CF)-related ...
cystic fibrosis, News Antibiotic Gentamicin Can Be Effective Without Causing Deafness, Study Finds December 22, 2020December 22, 2020 Scientists discovered the subtypes of gentamicin — a broad-spectrum antibiotic often used to treat ...
Columns, Mutations & Conversations - a Column by Tré LaRosa Yes, I Will Get the COVID-19 Vaccine December 21, 2020December 17, 2020 I can’t remember when I first fell in love with science. I loved learning ...
cystic fibrosis Claire’s Place Expands COVID-19 Emergency Fund, Work Proudly Program December 21, 2020December 21, 2020 The nonprofit Claire’s Place Foundation announced that its COVID-19 Emergency Fund and Work Proudly ...
cystic fibrosis, News CF Trust Partners With CF Foundation to Develop Gene-editing Therapies December 18, 2020December 18, 2020 The U.K. Cystic Fibrosis Trust is partnering with the U.S. Cystic Fibrosis Foundation to ...
cystic fibrosis, News Production Increases for Pyocin S5, Potential Antibiotic for Treating Lung Disease December 17, 2020December 17, 2020 Project GAIA, establishing a large-scale manufacturing process for Pyocin S5, an investigational antibiotic for ...
cystic fibrosis, News Potential Antibiotic Appears to Effectively Treat M. abscessus Infections December 16, 2020December 16, 2020 A newly developed antibiotic, called T405, appears to effectively kill Mycobacteroides abscessus, a difficult-to-treat ...
Columns, Life in the Grey – a Column by Bailey Anne Vincent Honest Question: Am I Losing My Mind? December 15, 2020December 10, 2020 Who would I be if I lost the parts of me that make me ...
Columns, Victorious - a Column by Brad Dell CF Is Infuriating, but I Shouldn’t Have Unleashed My Anger on Family December 15, 2020December 14, 2020 Two months ago, I watched myself die, then get resurrected on television. Sort of. ...
cystic fibrosis, News CF Foundation Awards Research Projects to Advance Therapies for All CF Patients December 15, 2020December 15, 2020 The Cystic Fibrosis Foundation has awarded a total of $1.7 million in nine grants ...
Columns, Path Unknown - a Column by Wendy Caroline The Existential Crisis of Going From Dying to Living December 14, 2020December 9, 2020 Imagine living your whole life knowing you have an early expiration date. Then you ...
cystic fibrosis, News CF Foundation Awards $2.76M to Research Differing COVID-19 Effects on Patients December 14, 2020December 14, 2020 The Cystic Fibrosis Foundation (CFF) has awarded $2.76 million to fund 11 laboratory studies ...
Columns, Valiant Voice – a Column by Lara Govendo Birthdays Are Bittersweet December 11, 2020December 9, 2020 Most people hate the attention birthdays bring. I get it. It’s only in recent ...
cystic fibrosis, News Defects in Mitochondria May Sustain Burkholderia Cenocepacia Infections in CF December 11, 2020December 11, 2020 Specific immune cells called macrophages in cystic fibrosis (CF) are unable to kill the ...
cystic fibrosis, News CF Children With COVID-19 Usually Do Not Develop Serious Disease, Study Finds December 10, 2020December 10, 2020 Children with cystic fibrosis (CF) who become infected with SARS-CoV-2 — the virus that ...
News Icenticaftor Effective in CF Patients With Certain Mutations, Phase 1/2 Trial Shows December 9, 2020December 9, 2020 Experimental therapy icenticaftor (QBW251) was able to improve lung function in cystic fibrosis (CF) ...
Columns, Life in the Grey – a Column by Bailey Anne Vincent Maybe I Should Stop Writing This Column December 8, 2020December 4, 2020 I don’t want to write this column. OK, for the sake of my editors, ...
