02/01/2022 – Mark Cuban’s Cost Plus Drug Company Will Provide Much Needed Relief for Drug Costs – This is basically an opinion piece, but Gunnar Esiason provides a lot of background on drug pricing in support of his position.
02/02/2022 – NextBreath Winter – Cystic Fibrosis Foundation has announced a new online conference that will focus on navigating uncertainty and the power of resilience. The CFFC calendar entry has links to the agenda and registration. Registration closes February 24th at 5:00 PM EST.
02/03/2022 – Tips for starting a conversation about mental health – Want to help but don’t know how? This article offers some suggestions on reaching out to someone who may be struggling.
02/04/2022 – Exon-Skipping Shows Potential to Treat Nonsense Mutations in CF – This is pretty exciting research that could expand the benefit from CFTR modulator treatments.
02/05/2022 – Giving You Permission to Accept My Chronic Illness – This blogger makes a powerful statement about embracing the realities of chronic illness.
02/07/2022 – Trikafta has given me a second lease on life – You can’t get too many stories on the wonder of Trikafta. This one relates the idea that “I didn’t realize how bad things were.”
02/09/2022– Self-screening Tool Developed for Nonwhite CF Populations – This new tool is a step toward ensuring equal treatment across the CF community.
02/10/2022 – “When the walk gets tough, I remind myself that those with cystic fibrosis face daily challenges and that I can get through this one day”: Denise’s story – This story from the UK is relevant here if you make two simple translations: replace “Kaftrio” with “Trikafta,” and replace “the Trust” with “Cystic Fibrosis Foundation.”
02/11/2022 – Opportunities to Provide Input Regarding Care – Cystic Fibrosis Foundation is seeking input on standards for two areas of CF care. Please note the deadlines in the announcements.
02/12/2022 – Personalized Medicines for Rare Mutations Are Focus of HIT-CF in EU – Research in Europe, as well as the US, promises that no one will be left behind in quest for correction of the root cause of CF.
02/13/2022 – Taking Care of Myself as a Mother With CF – Parenting with CF is becoming more common. This blogger tells the story of the added balancing required to remain a healthy mother.
02/14/2022 – The Importance of Celebrating National Donor Day – Happy National Donors Day. Every day we marvel at the new life found in transplant recipients. Today is an important reminder that the marvel would not be possible without the generous gift of organs from the donors and the support of the donors’ families.
02/15/2022 – Take Social Media With a Grain of Salt – This blogger suggests that social media, like so many other things, requires finding the right balance.