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Jan

CFFC Facebook Posts – January 2021 – Part 1

01/01/2021FDA Expands Labels for 3 Vertex CFTR Modulators – Let’s start the new year with good news on the scientific front. The expanded approvals will increase the number of people who can benefit from the advances in CFTR modulators.

01/02/2021I Am a Nurse with Cystic Fibrosis, and I Got The COVID-19 Vaccine – For anyone torn about the COVID vaccine – or their place in line, this blog may reassure you about accepting the chance at the earliest possible point in time.

01/04/2021What I Learned Going Off of Trikafta – This blog is a reminder that there is no perfect solution and you have to pay attention to what your body is telling you.

01/05/2021Small Study Shows Tobramycin Safely Treats Lung Infection in Infants With CF – There’s been a lot of news on the improvements in adult treatments. One way to improve adult health is to get an earlier start on fighting lung infections.

01/06/2021New class of antibiotics active against a wide range of bacteria – This study is not CF-specific; however, the approach is likely to work with resistant bacteria that impact people living with CF.

01/07/2021Dancing the Frenetic Routine of a Mom to a Child with CF – There is some level of comfort in routine, but that doesn’t make life any less hectic.

01/08/2021Arcturus to Develop ARCT-032 as RNA Therapy for CF – RNA therapies are not just for COVID. The exciting thing about this research is that it would fix the CFTR protein regardless of the mutation.

01/09/2021Managing Other Health Conditions With CF – As the title of this blog suggest, it will remind you that CF kids are not exempt from other health issues. However, the main story is self-reliance and resilience.

01/10/2021Feedback Opportunity: CF Genetic Counseling Recommendations – Here’s an opportunity to contribute your thoughts relating to genetic counseling. The researchers are particularly interested in hearing from parents of children 10 years old and younger, but all participation is appreciated.

01/11/2021Fecal Protein Tied to Worse GI Symptoms, Quality of Life in CF Children – The path to effective treatment starts with understanding the underlying cause of symptoms.

01/12/2021UK CF Medical Association’s statement on coronavirus – Cystic Fibrosis Trust provides periodic advice on COVID for the UK’s CF population. The January 11th up date at the top of linked article provides perspective drawn from their CF registry.

01/13/2021Study Examines Effects of Socioeconomics on Health of Youngsters – There is more than good medicine to good health.

01/15/2021Understudied Areas in CF Get Extra Attention at NACFC – Perhaps the success with “standard” CF treatments has contributed to the capacity to delve into aspects of CF that are not as well understood.


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