Why your ADHD Symptoms Might Actually be Trauma
– By Tina Clarke Results from studies like the TIDES study indicate that the prevalence of ADHD symptoms in children and adults with CF are significantly higher than the rest of the population, as are anxiety and depression. Researchers find some connections between anxiety and depression and whether the patient …
Cure-E-Us: Imogene at the World Orphan Drug Conference 2018 Part 1
World Orphan Drug Conference 2018, April 25-27 (Part 1) Getting to the Conference! I drove from northern NJ …5 hours along the tiresome NJ Turnpike, over the Delaware Memorial Bridge, through Delaware which seems like the wink of an eye and then through Maryland, only to get confused…is it 695,95, …
Stem cell transplants for lung regeneration – promising breakthrough in China
For the first time, researchers have succeeded in using stem cell transplantation to regenerate damaged lung tissue It has been reported earlier this week, that researchers from Tongji University in China have made a breakthrough in human lung regeneration technology which could greatly benefit patients with permanent lung damage such as bronchiectasis. (Since …
A letter from Dr Corey Nislow – the obligation to change the way research is done
Dear CF community, My name is Corey Nislow, I am a 51-year-old academic researcher who has spent the last 30 years studying how genes affect traits. For a bit of my background you can find me here: www.creativedestructionlab.com/people/corey-nislow/ and here scholar.google.ca/citations?user=n1e6LlcAAAAJ&hl=en . My reason for writing is simple. Just over a …
A Young Mom is Exploring BlockChain Technology
I me Julia at the Global Genes Conference in California last September. She and I share an interest in BlockChain technology. For me, it is a secure way to share data and get paid. Through our survey, we found that 90% of you (530+participants would like to be paid for …
Your Cystic Fibrosis Data is Valuable! Watch the Video…Take the Survey!
We hope you agree! Tell us what you think..Be Counted! Take the SURVEY NOW! Video by Lance 2020 ~ 1 minute Survey: 9 minutes
The Data Will See You Now! and Cystic Fibrosis Data is Valuable!
I was invited to speak at the PanagoraPharma Conference on Mobile Technology on June 28, 2017. I arrived first thing on Tuesday morning, slide set in hand. The 40th floor of Trade Tower 7 New York City is just as amazing as it sounds…but as I walked in, I was …
Home Monitoring vs. Traditional Care in CF: Year-Long Study Results
A study of home monitoring vs. traditional cystic fibrosis care in 267 patients age fourteen and older showed that after a year, FEV1 decline is similar in both models, though exacerbations are detected earlier in the home monitoring group. Home monitoring consisted of twice weekly electronic logging of spirometry and …
Lung Clearance Index Improved in Children Ages 6-11 on Ivacaftor/Lumacaftor
Ivacaftor/Lumacaftor Improves Lung Clearance Index Score In Children A new phase 3 study, led by The Hospital for Sick Children at the University of Toronto, Canada, has been completed on the CF treatment ivacaftor/lumacaftor in children ages 6-11 with two F508-del CFTR mutations. In a group of 206 children from …
Personal Indrepta Results
I wanted to report the latest news we are seeing with my daughter using Indrepta. She is 19 years old and is DDF508. She is home for the summer and has been away the last year at university. She has had to maintain her CF regimen by herself. Over the …