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Apr

CFFC Facebook Posts – April 2022 – Part 1

04/01/2022PMPRB court case outcome great news for cystic fibrosis – This article is specific to Canada; however, the subject is relevant to the current discussions in the US about the government’s role in setting drug prices.

04/02/2022IV Antibiotics May Be No Better Than Inhaled Ones for P. aeruginosa – This study deals with the treatment of initial infection before the bacteria becomes resistant.

04/04/2022 – Survey Opportunity: CF Nutrition White Paper – This survey opportunity ended 4/13/22, so no link is provided here.

The Cystic Fibrosis Foundation has brought together a small committee to develop a white paper on cystic fibrosis nutrition. This white paper is intended to provide best practices on a small number of current topics where there is a high need for guidance, while data is being gathered and published to inform a guideline. 

To help us better understand current practices and high priority questions around CF Nutrition, we ask that you complete the anonymous survey linked below. The results of this research survey will be used to help the committee finalize the scope and development of the white paper to improve the nutritional management of people with CF.

To participate in this opportunity , please click on the button below by Wednesday, April 13  at 11:59 p.m., ET. This survey should take 10-15 minutes to complete. Your identity will not be linked to your responses. 

04/05/2022 “The last couple of years have been been a window into our community”: Matilda’s #CFTruths story – Spoiler alert: This blog is summarized in the closing statement: “CF is different for everyone, so why are we comparing ourselves to others.”

04/06/20229 Ways to Support a Family With a Child With CF – You know these things if there is CF in your immediate, but this is a handy link to share with family and friends.

04/07/2022CF Foundation Funds Expansion of Clinical Trial Program for Potential Nonsense Mutations Therapy – Further evidence of CFF’s commitment to a no-one-left-behind strategy.

04/08/2022First Patient Dosed in Trial of Aerosol-delivered Genetic Medicine – Looking forward to positive results from this trial which is aimed at individuals who do not benefit from CFTR modulators.

04/09/2022The Race for Cystic Fibrosis Gene Therapies Is On! – Yesterday, we shared news about progress on a gene therapy option. Today’s post from Gunnar Esiason offers some background info and raises some important questions that will need to be addressed in implementation.

04/11/2022“There’s always joy to be found”: Salt in My Soul – We’ve previously shared a couple reviews of the movie, “Salt in My Soul.” Here is an interview with Mallory’s mom.

04/12/2022What I Wish I Would Have Known Before Trikafta – We hear a lot about the miracle of Trikafta. This blog tells the rest of the story.

04/13/2022Home Monitoring in CF May Help Detect Pulmonary Exacerbations – The conclusion in this study seems like a logical step in the trend toward telemedicine.

04/14/2022New research into pregnancy rates in women with CF – The analysis of data from the UK’s CF registry identified another benefit of Trikafta (Kaftrio in the EU).

04/15/2022Switching gears: How Alex took control of his CF treatments  – Alex’s story is the typical youth to adult to responsible adult transition with the added twists associated with CF.


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