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May

CFFC Facebook Posts – April 2021 – Part 2

04/16/2021The Unseen Struggles of CF – With the added stress of the pandemic protocols, the mental health aspects of CF are getting enhanced attention.

04/17/2021Supporting Your Adolescent’s Mental Health During COVID-19 – This YouTube presentation of CFF’s panel discussion of adolescent mental health is a good follow up to yesterday’s post about the “unseen struggle” in CF.

04/18/2021CF Therapy’s Effectiveness With Rare Mutations Can Be Determined in Lab – This study offers two bits of good news. One, a method to determine treatment effectiveness without subjecting the patient to trials. Two, the methodology may enable individuals with rare mutations to access CFTR modulators.

04/19/2021How Much Money is Spent on Cystic Fibrosis Research and Development? – We share lots of links to CF research. Perhaps like you, Gunnar Esiason wondered how much money is invested in that research.

04/20/2021Tim’s story: 50 years of living with cystic fibrosis – CF doesn’t respect national boundaries so Tim’s story from the UK is relevant here. This is a good perspective for parents of newly diagnosed infants.

04/21/2021Assessing Treatment Burden, Complexity May Improve Therapy Adherence – CF research includes behaviors as well as treatments.

04/22/2021Save the Date – CFFC will hold its first virtual Education Day on August 4th. Gunnar Esiason and Darcy Cunningham will be our featured speakers. More details will be shared as we finalize the program.

04/24/2021Making In-Person Care Center Visits a Priority Despite the Pandemic – Although the “normal” set by COVID protocols was not a big adjustment for people living with CF, the changes could be stressful.

04/25/2021The importance of organ donors, from a recipient’s perspective – April is National Organ Donation month. We’re thankful for the gift of life and the generosity of donor families.

04/27/2021After Transplant, It’s OK to Struggle and Feel Grateful – Continuing the National Organ Donation Month theme, this blogger covers the physical and emotional challenges that come with transplantation.

04/28/2021Global coalition calls for people with CF to be prioritised for the COVID-19 vaccine – COVID vaccinations are becoming widely available in NY but that isn’t necessarily the case in other parts of the country and, especially, across the globe. Fortunately, there are groups speaking out on behalf of our small but important community.

04/29/2021My Life Before and After the Affordable Care Act – Setting aside the possible political view, this blog highlights the impact of insurance on access to CF care.

04/30/2021Lung Disease Evident in CF Patients in Study Despite ‘Normal’ Lung Function – This study suggests that additional criteria – beyond FEV – would benefit earlier diagnosis of, and thus earlier intervention for, lung disease.


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