April 16, 2021April 14, 2021 After Transplant, It’s OK to Struggle and Feel Grateful I talk about my life with a double-lung transplant regularly. Sharing the double-edged sword of transplant during National Donate Life Month may help others see ... Read more
April 16, 2021April 16, 2021 Bioengineer to Use $2M Grant to Study Gene Editing for CF A bioengineer at Rice University will use a more than $2 million federal grant for a project to “repair” harmful mutations that cause cystic fibrosis ... Read more
April 15, 2021April 15, 2021 EveryLife Scholarship Fund Open Until May 7 for Adults With Rare Diseases in US The EveryLife Foundation for Rare Diseases is accepting applications for a scholarship program that aims to help adults with a rare disease pursue personal goals through ... Read more
April 15, 2021April 15, 2021 Claire’s Place Foundation Launches Website to Connect CF Community To mark its 10th anniversary, Claire’s Place Foundation has launched a website that seeks to connect the community of people affected by cystic fibrosis (CF). ... Read more
April 14, 2021April 14, 2021 ‘Fun’ Sweat-measuring Sticker May Aid CF Diagnosis in Children A soft skin sticker that can rapidly measure chloride levels in sweat, which are elevated in cystic fibrosis (CF) patients, may help avoid delays in ... Read more
Columns, Life in the Grey – a Column by Bailey Anne Vincent Being a Parent Will Kill You (and Other Truths We Never Talk About) April 13, 2021April 8, 2021 I am writing this from my bedroom — trapped. Like a character in a movie. ...
cystic fibrosis, News CF Therapy’s Effectiveness With Rare Mutations Can Be Determined in Lab April 13, 2021April 13, 2021 An ex vivo technique using nasal epithelial cells from a young girl carrying a rare ...
News Respinova’s Pulsehaler Device Wins FDA OK April 12, 2021April 12, 2021 Respinova’s non-invasive Pulsehaler, a medical device meant to ease breathing in patients with airway restrictions, ...
News Phase 2 Trial of BX004, Phage Therapy for Bacterial Infections, Advancing April 9, 2021April 9, 2021 A Phase 2 clinical trial assessing the safety and efficacy of BX004 — BiomX’s phage therapy ...
cystic fibrosis, News Trial Testing Personalized Chest Physiotherapy System for Mucus Clearance April 8, 2021April 8, 2021 A clinical trial underway in Israel is investigating how well a personalized chest physiotherapy system ...
News OPTION 2 Trial Testing MS1819 for EPI Posts ‘Mixed’ Topline Results April 7, 2021April 7, 2021 Treatment with MS1819 for exocrine pancreatic insufficiency (EPI) — when the pancreas does not release ...
I’m Talking About My Latest Surgery, So Read This Column April 6, 2021April 2, 2021 I just had surgery again, and now more people will follow me. I don’t want ...
Olgram Raises $1.77M to Develop New Class of Antibiotics Against Resistant Bacteria April 6, 2021April 6, 2021 Olgram has raised €1.5 million (about $1.77 million) in seed funding from investors to speed ...
One Walk/Run ‘Shuttle Test’ Captures Exercise Capacity in CF Children, Study Says April 2, 2021April 2, 2021
New LungQ Software Can Analyze CF Airway Problems in Seconds, Thirona Says April 1, 2021April 1, 2021
Life Edit Will Use CFF Award to Explore Gene-editing Technology March 31, 2021March 31, 2021 The Cystic Fibrosis Foundation (CFF) is awarding Life Edit Therapeutics up to $400,000 to explore its ...
Unpopular Opinion: I Know What I Need, but the Healthcare System Doesn’t March 30, 2021March 26, 2021
Cost of Rare Diseases in US? Nearly $1 Trillion in 2019, EveryLife Foundation Finds March 30, 2021March 30, 2021
Australia Approves Trikafta for Patients, 12 and Older, With Common Mutation March 30, 2021March 30, 2021
CHMP Favors Kaftrio to Treat CF Patients in EU Starting at Age 12 March 29, 2021March 29, 2021 A European Medicines Agency (EMA) committee favors extending the label for Kaftrio (ivacaftor/tezacaftor/elexacaftor), in combination with Kalydeco (ivacaftor), ...
cystic fibrosis CF Families in Ontario Send Video Plea for Access to Vertex Therapies March 25, 2021March 25, 2021 Parents of children and young adults with cystic fibrosis (CF) in Ontario sent a video ...
Columns, Victorious - a Column by Brad Dell My Life (and Death) Is More Than Statistics and Dead Dreams March 24, 2021April 13, 2021 It’s not my birthday or my lung transplant anniversary or anything. But today, I’m thinking ...
News Enrollment Complete in Phase 2 Trial Testing MS1819-PERT Combo for EPI March 24, 2021March 24, 2021 Patient enrollment has been completed for a Phase 2 clinical trial testing the investigational therapy ...
Columns, Life in the Grey – a Column by Bailey Anne Vincent Is Gender Bias in Healthcare Shortening My Life? March 23, 2021March 19, 2021 “I am sick of being a woman,” I say far too often. “Especially a sick ...
cystic fibrosis, News Translate Bio’s MRT5005 Shows Safety and Tolerability at Multiple Doses in Trial March 23, 2021March 23, 2021 Translate Bio’s ongoing Phase 1/2 clinical trial investigating MRT5005, its candidate inhalation therapy for cystic fibrosis ...
News Bacterial Fatty Acids May Play Role in Exacerbations in CF Children March 22, 2021March 22, 2021 Due to persistent bacterial infections, long-chain fatty acids (LCFA) are linked to continued inflammation in ...
cystic fibrosis Computer-designed Enzyme May Help to Kill P. aeruginosa in Biofilms March 19, 2021March 19, 2021 An enzyme produced using computer design, in combination with the antibiotic tobramycin, efficiently kills Pseudomonas ...
cystic fibrosis, News Bronchitol, Inhaled Powder for CF Mucus Clearance, Arrives in US March 18, 2021March 18, 2021 Bronchitol (mannitol), an inhaled mucus-clearing treatment for cystic fibrosis (CF), is now commercially available in ...
News Phase 2b Trial of MS1819, Yeast-based EPI for CF, Fully Enrolled March 17, 2021March 17, 2021 AzurRx BioPharma announced that its Phase 2b trial evaluating the safety and efficacy of MS1819 in ...
Columns, Life in the Grey – a Column by Bailey Anne Vincent Chadwick Boseman Is Still Dead, and We Need to Talk About It March 16, 2021March 11, 2021 Chadwick Boseman is dead, and I’m going to write about it. He has been dead ...
cystic fibrosis, News CF Foundation Continues Free Access to Online Exercise Platform March 16, 2021March 16, 2021 Thanks to the Cystic Fibrosis Foundation (CFF), people with cystic fibrosis (CF) in the United ...
News New Gene-editing Tool Can Reverse Specific CF-related Mutations March 15, 2021March 16, 2021 A precise gene-editing tool that reverses single DNA mutations may lead to genetic therapies for ...
Columns, Valiant Voice – a Column by Lara Govendo I Wasn’t Prepared for Kidney Damage After My Double-lung Transplant March 12, 2021March 10, 2021 “You have stage 3 kidney disease,” the doctor told me. I remember that first appointment ...
News CF Foundation’s Impact Grant Program Benefits Communities March 12, 2021March 12, 2021 One need look no further than the name of the Cystic Fibrosis Foundation‘s Impact Grant program to ...
News Analysis of GI Tract Finds High CFTR Gene Activity in Small Intestine March 11, 2021March 12, 2021 Molecular analysis of single cells lining the digestive tract found high CFTR activity — the gene ...
cystic fibrosis, News P. Aeruginosa, Other Bacteria Appear to Support Each Other in CF Lungs March 10, 2021March 10, 2021 Two bacterial species known to be frequent sources of lung infection in people with cystic ...
Columns, Life in the Grey – a Column by Bailey Anne Vincent A Day in the Life of a Life That Can’t Live March 9, 2021March 3, 2021 I am staring at a blank page trying to figure out what to write, and ...
News Oral Nutritional Supplements Linked to Better Vitamin Levels March 9, 2021March 9, 2021 The use of oral nutritional supplements is associated with a higher intake of nutrients and ...
