Author Archive

Nov

CFFC Facebook Posts – November 2019 – Part 1

11/02/2019 - Tools and Tips for Parents of Kids with CF – This page has links to a wide range of information resources for families of a child with CF. The topics cover issues faced by the family members as well as the challenges experienced by the child. 11/03/2019 - I Have Two Nonsense Mutations. Here’s What a Path to a Cure Means to Me – This blog post is a good reality check in the wake of the news about Trikafta. 11/04/2019 - Alaxia Joins iABC to Speed Development of ALX-009, Potential Antibiotic for Resistant Lung Infections – With the recent attention on the advance in CFTR modulators, it's important to also recognize the efforts being made to fight lung infections. 11/05/2019 – CF Roundtable Autumn 2019 - CF Roundtable is a great resource. The focus topic of this issue fits nicely with our recent coverage of CFTR modulators. The various stories will give you a good perspective whether or not you are currently using a CFTR modulator. 11/06/2019 - Cystic Fibrosis: The Physical and the Mental – We can't say it too often: mental health is an equal component in the challenge of CF. 11/07/2019 - CF research: this time it's personal – Here's a story from the UK about someone with CF (and not the first) taking an active role in solving the mysteries of CF. 11/08/2019 - $15 million cystic fibrosis research program launched – This announcement from the University Of Queensland (Australia) reminds us that research to combat CF's ...

Nov

CFFC Facebook Posts – October 2019 – Part 2

10/16/2019 - Fall A Term: A Lot of Work, A Cold and More Fun – An update on Gunnar Esiaison's progress in grad school which provides insight on adaptation. 10/17/2019 - Preventing the Spread of Misinformation - [First of two companion articles.] In our rush to get news, we sometimes put too much reliance on the headline. 10/18/2019 - Orkambi of Definite Benefit But Risk Evident in Patients Who Can’t Tolerate It, French Study Finds – Applying the advice in the article posted yesterday, it's important to read this article all the way through to properly understand the information. 10/19/2019 - Living the Island Life With CF – Here's another story about how CF impacts – but does not control – the life you live. 10/20/2019 - Navigating CF: Choosing an Insurance Plan – In the open enrollment period for health insurance, we could all use help making choices that serve us best. CFF has produced an interactive guide to help you with your selection. 10/21/2019 - Ryan and Martin: a meeting of minds – This article demonstrates that good things can happen when researchers met people who are impacted by the research. 10/22/2019 - FDA approves new breakthrough therapy for cystic fibrosis – Hot off the presses. An additional CFTR modulator has been approved by the FDA. While this drug is applicable to those with at least on F508del mutation, the trials have shown that this combination works for individuals who did not benefit from previous combo drugs. 10/23/2019 – From CFF Community ...

Oct

Clinical Trial Alerts – October 2019

Cystic Fibrosis Foundation issued the following clinical trial alert in the month of October. October 16, 2019 Study of VX-445 triple combination in teens and adults with cystic fibrosis who have one copy of F508del and one copy of a gating or residual function mutation Status: Enrolling Description: This study will look at the safety and effectiveness of three CFTR modulators when taken in combination: VX-445 (elexacaftor), tezacaftor, and ivacaftor. CFTR modulators are drugs intended to help CFTR protein function closer to normal. Age: 12 Years and Older Mutation: One Copy F508del Fev1% Predicted: 40 to 90% Number of Visits: 8 Length of Participation: 20 weeks ClinicalTrials.gov link: https://clinicaltrials.gov/ct2/show/NCT04058353

Oct

CFFC Facebook Posts – October 2019 – Part 1

10/01/2019 - Best foods to eat with cystic fibrosis – Good news: this is a long list. 10/02/2019 - North American Cystic Fibrosis Conference (NACFC) – Read an announcement about this year's NACFC (including the opportunities to live stream) on the CFFC calendar. The announcement includes links to the program and registration. 10/03/2019 - Hexoskin Smart Shirt Can Accurately Assess Respiratory Function, May Be Tool in CF, Study Shows - “Wearable technology” may turn out to be more than a fad. Imagine lung funtion tests that don't require a trip to the clinic. 10/04/2019 - Parenthood After a Lung Transplant – As treatments advance, “parenthood” and “transplant” are two words becoming more common in the CF community. This blog puts these words together in a touching story. 10/05/2019 - Patient-derived Mini-organs Work as ‘Avatars’ to Test CF Treatments – The dream of personalized medications may becoming true in Australia. Exciting progress in the use a patient's own cells to test medications in the lab. 10/06/2019 - What to know about nitric oxide supplements – Nitric oxide is sometimes mentioned as an alternative medicine for CF. This article provides a broad analysis of the product. 10/07/2019 - Motocross Freed Me From CF Depression – We're not recommending motocross for everyone, but the message in this story is to find an activity that feeds your spirit. 10/08/2019 - Debunking the Myths About Vaccine Safety – As we enter the flu season, it is ...

Oct

CFFC Facebook Posts – September 2019 – Part 2

09/16/2019 – Living with CF Golf Tournament 2019 Results – Another successful event was held on Saturday the 14th. The golfers went home with prizes, but CFFC was the real winner. 09/17/2019 - Things You Shouldn’t Say to a Parent of a Child With CF – The blog author lists 7 things not to say. Have you heard them all? 09/19/2019 - Prenatal Testing for Cystic Fibrosis Influences Pregnancy Outcomes, Review Finds – The ethics associated with prenatal testing have been discussed ever since the identification of the CF gene. This article concludes with the recommendation for “nondirective counseling” when prenatal testing is being considered or has been conducted. 09/20/2019 - Knowing When You’ve Reached Your Limit (Then How to Effectively Communicate It and Reset) – Self awareness (listening to your body and responding accordingly) is a key element in maintaining your health. 09/21/2019 - The Power in Choosing with Kori Tolbert – CFFC past president Kori Tobert Doherty is dedicated to self advocacy and the power we have to influence the outcome of our healthcare. In this podcast, she discusses the principles and goals of her Booster Jots program. 09/22/2019 - Avoiding CF Information Overload – Is it odd for a CF internet source to suggest caution in internet CF sources? Well, there are some useful tips in this blog. 09/23/2019 - Physical Activity Levels in CF Should Be Objectively Researched, Review Says – Sometimes, we don't need studies to reveal the nature of CF treatments; however, the study suggests that properly defined research could lead to ...

Sep

Publications from Cystic Fibrosis Australia

Cystic Fibrosis Australia has produced a wide range of brochures covering all aspects of life with CF. While some of the material is specific to Australia, the majority of the information is relevant to anyone living with CF or wanting to know more about CF. You can find these resources at Facts, Figures and Publications. We have also added a link to our Information Resources, Life with CF section. The brochures are arranged in the following categories: Carrier Screening and diagnosis Medications and procedures School life Physiotherapy CF FIT Nutrition Hospital Germs Comorbidities (continence, bone health and CFRD) Lung Transplant Carers Sexual Health and Fertility Travel Climate Change and CF Exercise and Sport Each topic provides links to PDF brochures dealing with various aspects of that topic. For example, the Carrier Screening and Diagnosis section includes brochures entitled: "New Diagnosis Information for Parents," "Carrier Screening" and "Sweat Test." The brochures are written in an easy-to-read style. Breaking the information into multiple sections not only helps you deal with information overload, but also makes it easier to focus on the topic of most interest to you.

Sep

Clinical Trial Alerts – September 2019

Cystic Fibrosis Foundation issued the following clinical trial alerts in the month of September. September 17, 2019 Study of QBW276 in adults with CF Status: Completed with results Description: This study evaluated the safety and tolerability of QBW276, an inhaled drug designed to improve mucus clearance. This study also evaluated how the body processes the drug. Age: 18 Years and Older Mutation: No Mutation Requirement Fev1% Predicted: 40 to 100% Number of Visits: 6 Length of Participation: 14 days ClinicalTrials.gov link: https://www.clinicaltrials.gov/ct2/show/NCT02566044 Study of adherence to lumacaftor/ivacaftor using a smart pill bottle device Status: Completed with results Description: This study evaluated the impact of a smart pill bottle device on adherence to lumacaftor/ivacaftor (Orkambi®).This study was for people with CF who were not currently being treated with lumacaftor/ivacaftor (Orkambi®) prior to enrolling in the study. Age: 16 Years and Older Mutation: Two Copies F508del Fev1% Predicted: 40% or greater Number of Visits: 7 Length of Participation: 48 weeks ClinicalTrials.gov link: https://clinicaltrials.gov/ct2/show/NCT02823470 Study of VX-661 plus ivacaftor in people with CF who have two copies of the F508del CFTR mutation Status: Completed with results Description: This study evaluated the safety and effectiveness of the CFTR modulator drug VX-661 in combination with ivacaftor (Symdeko®). This study was for people with CF who have two copies of the F508del CFTR mutation. Age: 18 Years and Older Mutation: Two Copies F508del Fev1% Predicted: 40 to 90% Number of Visits: 6 Length of Participation: 60 days ClinicalTrials.gov link: https://clinicaltrials.gov/ct2/show/NCT02508207

Sep

CFFC Facebook Posts – September 2019 – Part 1

09/01/2019 - Clinical Trial Alerts - August 2019 – Cystic Fibrosis Foundation released several clinical trial updates in August, most of which provide reports of competed trials. 09/02/2019 - MAC Lung Infections Best Treated When Specific Bacterial Species Known, Study Finds – This study demonstrates two things. One, the advances in genetics allow for more precise diagnosis. Two, more precise diagnosis leads to more effective treatment. 09/04/2019 - Resources for Supporting Families Coping with Chronic Illness – A collection of links to a lot of good information has been compiled by Online MSW Programs. 09/05/2019 - Long-term use of Kalydeco reduces lung infections according to Registry analysis – An interesting finding drawn from the data captured in the UK CF registry. 09/06/2019 - The Kind of Friend We Deserve – Your personal support system is a critical part of overcoming the challenges presented by CF. 09/07/2019 – Living with CF Golf Tournament - One week to go until CFFC's golf tournament. Our sponsors are lined up. Southern Meadows Golf Club is in great condition. The long range weather forecast is look marvelous. All we need is you! Send an email to gsmith@cffamilyconnection.org to secure a slot in the tournament. It's not too late to sign up. 09/08/2019 - Things I Learned After Gallbladder Surgery – We know that CF does not give you a pass on the rest of the health issues that affect the rest of the population. This blog shares some observations on minor surgery. 09/09/2019 - Amikacin Liposome Therapy Has Similar Efficacy as Tobramycin for P. aeruginosa, Study Shows – Another weapon in the arsenal to combat Pseudomonas. 09/10/2019 - Cystic fibrosis carriers: What to know – This article provides information about the ...

Sep

Living with CF Golf Tournament – 2019 Results

After last year's break in the action, CFFC's Living with CF Golf Tournament returned in 2019 with good spirits, good weather and, as a result, good golf. Eighteen golfers gathered on September 14th for nine holes of golf. The clouds that lingered at tee time (see above picture) dissolved and we finished in a pleasantly warm sunshine. Thanks to our generous sponsors, each player was able to return home with a prize. Therefore, the scores just determined the order for prize selection. Here are the results: With a score of 32 (par), first place went to Cindy Garcia, Jean Lazeroff, Helena Spring and Mary Moss (in spirit). Second place was secured by Dan Sullivan, Jamie Romeo and Kristen Shaw with a score of 34. Shooting 36 put Jackie Goldberger, Jeff Goldberger, Sue Smith and Greg Smith in third place. Linda Maloney, Julie Maxon, Bruce Oliver and Tom Wickerham shot a 38 to place fourth. The field was rounded out by Caroline Burtner, Linda Beach, Peggy Rickman and Stella Burtner with a 41. Gift baskets also went to Greg Smith and Tom Wickerham for placing their tee shots closest to the pin on holes 2 and 9, respectively. Of course, the real winner was our local CF community. The net proceeds from the event will go toward funding our Hospital Help Packet program. For that, we are grateful to all of our supporters. Our returning prize sponsors, Marketview Liqour and Wegmans, were joined by Wright Beverage Distributing. Allan Mason provided some last minute additions to the prize table. We also inherited some unclaimed prizes from the Lillian Invitational held the preceding night at Southern Meadows Golf Club. Additional funding was provided by our hole sponsors: Fitz Fitzpatrick and Linda Stackman, Plantation Party House, Jackie and Jeff Goldberger, Walt and Mary McCanna, Ken and Sue Graham, and the Dwyer Family. These sponsors were supplemented with contributions from: Dan and Jane Sullivan, Bob Parise, Kevin Donavan, Allan Mason and Joan Updaw. Last but not least, we appreciate the ongoing assistance from Southern Meadows Golf Club. In addition to acting as host, golf pro Mike Clawson served as our official scorer and menu coordinator. The golfers also directly benefited from Rick ...

Sep

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.