CFFC Facebook Posts – April 2020 – Part 2

04/16/2020 - How I Fight Feelings of Isolation – Once again, an individual living with CF is using her experience to teach the rest of us how to cope with the “stay at home” atmosphere we are now living in. 04/17/2020 – CFFC Face Mask Offer - We are pleased to announce a timely offer of fabric face masks to members of the Rochester/Finger Lakes CF community. Clink the link below to learn more. 04/18/2020 - COVID 19 DEFENSE for Cystic Fibrosis Patients, or Anyone With Compromised Immunity – CFFC past president, Kori Tolbert Doherty, provides information on a simple step you can take in improve your protection against COVID-19. Her introduction says: “A prompt from my Continuum colleague and Buteyko practitioner Robert Litman , encouraged me into some more research around two simple things we can do to support ourselves with potential COVID 19 exposure.(So this means all of us given the spread and inability to tell the extent of who is carrying.) Nasal breathing and humming. I created this video to share this info with our CF Community, anyone that is at higher risk from exposure to this virus, and well, just anyone in general because when it cones down to it, it’s just good info for all ?. 04/19/2020 - Protein Called TAS2R38 Linked to Respiratory Tract Complications in CF – This study provides further explanation for the differences in CF symptoms. 04/20/2020- Revealing the secrets of bugs by tracking their genetics – The kind of work that has been done on CF infections is being used to solve the COVID-19 riddle. 04/21/2020 - How Living in Portugal Led to a Late Diagnosis – This blog post reminds us that CF care can vary greatly in different parts of the world (or different parts of this country). 04/23/2020 - Faces of a Clinical Trial – Michael Hamilton – There's a lot of publicity about drug and vaccine development. This blog from Canada gives a personal view from inside a clinical trial. 04/24/2020 -


You have the opportunity to add your thoughts to research that will be provided to health care decision makers. Here's the announcement distributed by Cystic Fibrosis Foundation. The Institute for Clinical and Economic Review (ICER), a nonprofit, nonpartisan organization that conducts analyses on clinical treatments, recently announced their intent to review the triple-combination elexacaftor/tezacaftor/ivacaftor modulator therapy that is currently under FDA review. These analyses inform on the cost-effectiveness and clinical value of therapies, and are intended to be tools for health care decision makers. ICER is currently seeking input from the CF Community through their patient open input questionnaire. This questionnaire serves to provide ICER with information such as:   What it is like to have CF Benefits and challenges to modulator therapies What is important to people with CF and their families What are the challenges in accessing treatments   All comments are welcome. To participate in this opportunity, please click on the button below by September 25th, 2019. Comments submitted will be used to assist ICER in their review. The sooner they receive comments the more likely they will be incorporated.   For the first question, "On which ICER report are you providing input?" please use cystic fibrosis as your answer.   Submit a Comment   Please note, the Cystic Fibrosis Foundation does not decide how how ICER will use this feedback. The CF community will have other opportunities throughout the eight-month development of their evaluation to help inform and help shape their report. To learn more about their process, please read their Patient Participant Guide.   Best, The Community Voice Team   Unlike many surveys, this questionnaire asks for comments in your own words rather than multiple choice selections. While this may take more time, you are able to put your can highlight the issues of greatest importance to you.


CFFC Facebook Posts – December 2017 – Part 2

For our web visitors who do not follow CFFC on Facebook, here are the posts added in the second half of December 2017. 12/16/2017 - Why Aspiration Is a Silent, Hidden Danger for Cystic Fibrosis Patients – Some interesting information on another risk. (Like you need another risk, right?) 12/18/2017 - UF Study Links Proton Pump Inhibitor Use with More Frequent Hospitalization in CF Patients – This article demonstrates the double-edged sword of treatments in complex medical conditions. 12/19/2017 - Transitioning Back to Real Life After Hospitalization – An interesting take on the relief of being discharges from the hospital. 12/20/2017 - Preventing Bacteria from Communicating Could Make CF Therapies Like Kalydeco More Effective, Study Reports – This study introduces two significant concepts. (1) Quorum sensing in bacterial infections can decrease CFTR function. (2) There are potential treatments to disrupt bacterial quorum sensing. 12/21/2017 - Breathe In Ep. #11 – Nutritional Care – Gunnar and the Salty Sisters explore the evolution of nutrition in their CF care from both personal and medical perspectives. 12/22/2017 - Cancer Gene, PTEN, Appears to Work with CFTR to Prevent Lung Infections, Study Reports – Here's an example where observant researchers produce an unanticipated result. The discovery of the relationship between CFTR and PTEN not only elevates the significance of CFTR therapies, but also may lead to new anti-inflammation therapies. 02/23/2017 - When a Loved One Dies, What Happens to the Love You Shared? - At CFFC, we focus on living with CF, but we cannot escape the knowledge that CF is a fatal disease. However, as this story demonstrates, the spirit of those affected by CF can overcome the heartache of the ultimate outcome. 02/24/2017 - Proteostasis’ CFTR Modulators Show Potential in Improving Effectiveness of Orkambi - Further advances in making CFTR treatments more effective. 12/26/2017 - Synthetic Peptide Might Be Potential Treatment for Bacterial Infection Often Seen in CF Patients – This study opens a new avenue that may not only slow the advance of Pseudomonas, but may also make the bacteria more susceptible to antibiotic treatments. 12/27/2017 - I Have New Lungs and I Still Have CF – Lung transplantation solves the problem of CF's progressive lung disease, but this blog reminds ...


Clinical Trial Alerts – 11/30/2016

CFF provided the following clinical trial updates on 11/30/2016: Phase 3 study of tezacaftor (VX-661) combination drug in children with cystic fibrosis Description: This two-part study is taking place at multiple care centers across the U.S. It will look at the safety and tolerability of the drug tezacaftor (VX-661) in combination with ivacaftor. It will also look at how the body processes the drug. Age: 6 Years to 11 Years Mutation: Two Copies F508del or One Copy F508del Fev1% Predicted: 40% or greater Number of Visits: 9 Length of Participation: 28 weeks ClinicalTrials.gov link: https://clinicaltrials.gov/ct2/show/NCT02953314 Phase 2 study of VX-440 combination drug in people with cystic fibrosis Description: This study is taking place at multiple care centers across the U.S. It will look at the safety and effectiveness of the drug VX-440 in combination with ivacaftor and/or tezacaftor (VX-661). Age: 18 Years and Older Mutation: Two Copies F508del or One Copy F508del Fev1% Predicted: 40 to 90% Number of Visits: 11 Length of Participation: 57 days ClinicalTrials.gov link: https://clinicaltrials.gov/show/NCT02951182 Phase 2 study of VX-152 combination drug in people with cystic fibrosis Description: This study is taking place at multiple care centers across the U.S. It will look at the safety and tolerability of the drug VX-152 in combination with both ivacaftor and tezacaftor (VX-661). Age: 18 Years and Older Mutation: Two Copies F508del or One Copy F508del Fev1% Predicted: 40 to 90% Number of Visits: 10 Length of Participation: 16 weeks ClinicalTrials.gov link: https://www.clinicaltrials.gov/ct2/show/NCT02951195  


Education Day 2015 is almost here

We're less than two weeks away from the 2015 CF Education Day geared to the Rochester/Finger Lakes community. We're looking forward to keynote speaker Lynn Feenan's observations and advice on becoming more active participants in our health maintenance plans. We also have two breakout sessions, each including four topics, which will offer insight into dealing with a broad spectrum of challenges that arise in life with CF. Here's the Education Day Schedule 2015. If you have not done so already, please register for the event at: https://www.surveymonkey.com/s/7MBTDG6 Advance registration will help ensure that we have the right amount of refreshments and sufficient space for the breakouts. We look forward to seeing you Saturday, May 30 at Lake Riley Lodge in Cobbs Hill Park. Check our event calendar for a map.


CF Trial – 2/4/15

The CF Foundation recently provided an update on the following research trial. Vertex 661 and ivacaftor (VX-661-106) in people with cystic fibrosis ages 12 and older with F508del-CFTR mutation This is a Phase 3, multi-center trial that will look at the safety and effectiveness of the drug VX-661 in combination with ivacaftor. Researchers will test the drug's effectiveness by measuring participant's lung function in addition to other outcomes.  This trial is for people ages 12 years and older who have two copies of the F508del-CFTR mutation. The trial will last approximately 6 months. It will require blood draws, sweat tests and lung function tests. CFF Link: https://tools.cff.org/Display/dsp_ClinicalResearchHTML.cfm?id=402&IDH=9233958 ClinicalTrials.gov Link: https://www.clinicaltrials.gov/ct2/show/NCT02347657


CF Trial – 8/2/14

The CF Foundation recently provided an update on the following research trial. TOBI Podhaler Usability Study This is a phase 4 multi-center trial for people over the age of 6. The study will have two visits. At the second visit participants will be asked to inhale contents of placebo capsules through the Podhaler by following the instructions for use. Researchers will look to see if patients following the instructions can demonstrate safe and effective use of the Podhaler device. CFF Link: http://www.cff.org/Display/dsp_ClinicalResearchHTML.cfm?id=354&CTSubId=75 ClinicalTrials.gov Link: http://www.clinicaltrials.gov/ct2/show/NCT02178540