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Aug

CFFC Facebook Posts – August 2022 – Part 1

08/01/2022Our experts answered your questions when it comes to exercise and CF – You probably know the benefits of exercise, but a little reinforcement never hurts.

08/02/2022Colon Cancer One Year Later – We don’t need reminders that CF does not exempt you from life’s other hardships. This is also a story of perseverance and mental strength.

08/03/2022Cost of CF: Chantelle’s story – Although she lives in the UK, Chantelle’s story will be familiar to you; not just the range of health issues but also the strain on finances and mental well being.

08/04/2022ASO Cocktail May Help in Treating CF Due to W1282X Mutation – Initial research shows promise for developing treatments for specific mutations and expand the universe of individuals who would benefit from CFTR modulators.

08/05/2022CF Foundation Estimates Increase in CF Population – It comes as no surprise that the number of people living with CF has increased dramatically in the last decade.

08/06/2022The Benefits of Having a Coach During the Transplant Process – The saying that you must walk a mile in someone’s shoes to understand what they are going through is certainly true in the CF community. If you find this story relevant, you will also be able to relate to this year’s CFFC Education Day.

08/07/2022 It doesn’t matter much which fiber you choose — just get more fiber! – This study is not directly related to CF; however, healthy gut microbes are important for intestinal health which is important to people living with CF.

08/08/2022 – It’s not too late to register for CFFC Education Day [Acutally, now it is too late.] – Two days to go for “Pursuing Mental Wellness.”

08/09/2022How I Felt Seeing My Daughter in Her Vest for the First Time – Certain memories in the course of CF stick in your mind and trigger an emotional response.

08/10/2022 – Join us tonight at 6:30 for CFFC Education Night: Pursuing Mental Wellness. Click the link below to register – right up to air time. [Link expired]

08/12/2022 – In case you missed it, or are looking for an encore presentation, you can view a recording of CFFC’s Education Day program Pursuing Mental Wellness; just click the link below. We are so grateful for the honest and comprehensive insight offered by our panelists. We also appreciate the financial support from our sponsors Vivus and Genentech.

https://us06web.zoom.us/rec/share/O4XE_mM7qwwzKQAcfog1u5Sz2Y5O8D6w_2tpHQvbJmFIDhLsaUkxSdwip6tC6lTq.3xhTrX6sCjE0nYzq

08/13/2022Learning about Mental Wellness – Yesterday, we shared the link to the recording of our Education Day program “Pursuing Mental Wellness.” This link will take you to a report on the event which not only includes a link to the recording but also includes some supplemental resources that were not presented during the program.

08/14/2022Drug pricing legislation missed an opportunity to demand deeper price cuts – Gunnar Esiason provides his analysis of the gains and losses in the current legislation dealing with drug pricing. CFFC does not take a position on the legislation but wants to increase awareness of the issues.

08/15/2022Living with CF Golf Tournament – We addressed mental health with Education Day, now we want to work on physical health through our Living with CF Golf Tournament on September 10th. Check out the link for details (and entry form).


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