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Jun

CFFC Facebook Posts – June 2022 – Part 1

06/01/2022New antibiotics could prevent hearing loss in people with cystic fibrosis – Medications can have side effects so researchers are looking into treatments for treatments.

06/02/2022‘Dust and Ashes’: Feeling Like a Burden Kept Me From Being Transparent – This blogger presents one of the many faces of mental health in CF.

06/03/2022Extracellular Matrix Changes May Point to New Biomarkers, Therapies – This research identifies physiological changes in lung tissue that reduce lung function, and suggests a path to therapies to restore lung function.

06/04/2022Becoming the Role Model I Wish I Had – This story is about learning to understand who you are and, then, respect yourself. It also reminds us that people living with CF deal with other challenges beyond CF.

06/06/2022Living with CF Golf Tournament – Come join us on September 10th. Have fun playing golf while supporting our programs.

06/07/2022Audrey’s Story – Audrey’s story has a lot of familiar pieces. The spirit she has developed through her experiences is also familiar.

06/08/2022PP-007 Resolves Lung Inflammation in CF Mouse Model – Prolonged inflammation promotes damage to lung tissue. This study offers an option manage inflammation without the negative side effects of anti-inflammatory drugs.

06/09/2022CFF Commitment to Equity, Racial Justice, Diversity, and Inclusion – CFF’s pledge that no one will be left behind applies to more that specific mutations. This statement of commitment includes links to detailed discussions of components of their approach.

06/10/2022Understanding patient experiences is key to delivering meaningful CF care – This article reports on surveys conducted by UK’s Cystic Fibrosis Trust but we could expect similar results in the US. This summary includes links to full reports on the pediatric and adult surveys.

06/11/2022Research Study Design for Pancreatic Enzyme Replacement Therapy – Here’s an opportunity to add your views to the design of research into new enzyme replacement therapies. The survey closes June 23rd.

06/12/2022Reducing Trikafta Dose May Ease Mental Side Effects, Study Reports – Some Trikafta users have reported adverse effects such as “brain fog” or insomnia. This study demonstrates that many of those affected may get relieve (without loss of the primary benefit) by reducing the Trikafta dosage.

06/13/2022What It Means to Have a Full-Time Job With CF – Employment is one of the benefits resulting from improved treatments.

06/14/202284 per cent of the public unaware those with cystic fibrosis can’t meet in person – CF Week poll finds – It’s CF awareness week in the UK and their survey shows why we still need to push for increased awareness.

06/15/2022“We want to show that CF should not limit your life”: Tilly, aged 14 – This young woman demonstrates what can be accomplished by someone with vision and optimism.


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