News

Jan

CFFC Facebook Posts – January 2019 – Part 1

For those who do not visit Facebook, here are the posts to the CFFC page for the first half of January. 01/01/2019 - Defect in zinc supply mechanism affects pathology of intractable pulmonary diseases – From the archives, a study that adds to the understanding of CF lung congestion. 01/02/2019 - Is 2019 FINALLY Going To Be The Year We Write “cystic fibrosis” Correctly? - A little sarcastic humor from Gunnar to start the new year. 01/03/2019 - Top 10 Cystic Fibrosis Stories of 2018 – This is the season for reflecting on the prior year, Here is the list of the top 10 stories reported in Cystic Fibrosis News Today as selected by their editors. 01/04/2019 - Dear Me, It’s Me: Get Your Act Together – We have all said “if I had only known” at some point. This young man explains the special meaning of that phrase for those living with CF. 01/05/2019 - Juggling Responsibilities and Compliance – This young man talks about his adjustment in assuming responsibility for his CF care. 01/06/2019 - Your Care Team Might Accidentally be Overlooking your Mental Health Needs – Here's another plea for more effective attention to CF's mental health issues; this time, based on a research study. 01/07/2019 - Disaster Ahead: Cystic Fibrosis Related Diabetes (CFRD) – The complication that’s impacting your lungs more than you realize – An interesting compilation of research relating to CFRD and the implications for lung function. 01/08/2019 -

Jan

Update on “Five Feet Apart”

In November, we shared opposing viewpoints concerning the upcoming movie Five Feet Apart. The Cystic Fibrosis Foundation (CFF) has been receiving comments and inquiries reflecting the variations in reactions to the story line. In response, CFF has added resources to their web site to help people learn the realities of life with CF as compared to the representations for dramatic purposes. Paula Lomas, MAS, RN, CCRP, Director, Clinical Communications for CFF provided the following information regarding the movie and the resources available through CFF. As we first shared last October, Five Feet Apart, a film about two teens with CF starring Cole Sprouse and Haley Lu Richardson, will be in theaters nationwide on March 22. A book based on the film was published in November. The film and the book have generated significant discussion within the CF community, and we have heard from some care teams and others in the CF community that they are concerned about the accuracy of the story. Themes in the movie include cross infection, lung transplant, emotional wellness, and mortality. One of the main characters in the movie is waiting for a transplant; the other is on a clinical trial for a drug to treat a B. cepacia infection. The film is a work of fiction and it has been significantly dramatized for the sake of the story. Still, we anticipate that teens in particular may identify with the emotion behind the story, even if it is not medically accurate, or reflect their particular experience. The CF Foundation was not involved in the production of Five Feet Apart, but we are hopeful that the film will be a positive opportunity to increase awareness of CF among the general public, and to further understanding of our community and the challenges they face in living with their disease. Our goals are to ensure that accurate information about CF is available and to support the CF community – including care centers and people with CF – with resources that relate to key themes in the film. To that end, CBS Films shared with us that the next version of the trailer will be released Wednesday, January 16 during the much-watched season premiere of Riverdale, the CW series featuring the film’s lead actor, Cole Sprouse. In response, we have created www.cff.org/FiveFeetApart as ...

Jan

Clinical Trial Alerts – January 2019

Cystic Fibrosis Foundation distributed the following clinical trial updates in January. Click the trial title to get more details. January 8, 2019 Phase 1/2 study of VX-445 combination drug in healthy adults and then in people with cystic fibrosis Status: Completed with Results Description: This study evaluated the safety, tolerability and effectiveness of the drug VX-445 in combination with tezacaftor/ivacaftor (Symdeko®) in people who either have two copies of the F508del CFTR mutation or have one copy of F508del and one copy of a minimal function CFTR mutation. Age: 18 Years and Older Mutation: Two Copies F508del or One Copy F508del Fev1% Predicted: 40 to 90% Number of Visits: 6 Length of Participation: 12 weeks ClinicalTrials.gov link: https://clinicaltrials.gov/ct2/show/NCT03227471  SOLUTION: Study of Liprotamase in people with CF Status: Completed with Results Description: This study evaluated the safety and effectiveness of the drug liprotamase in people with CF who were taking digestive enzymes. Age: 7 Years and Older Mutation: No Mutation Requirement Fev1% Predicted: 30% or greater Number of Visits: 10 Length of Participation: 28 weeks ClinicalTrials.gov link: https://www.clinicaltrials.gov/ct2/show/NCT02279498 Persistent Methicillin Resistant Staphylococcus Aureus (MRSA) Growth in Respiratory Culture Status: Completed with Results Description: This study evaluated the safety and effectiveness of inhaled vancomycin to eliminate the bacterium, methicillin-resistant Staphylococcus aureus (MRSA) in people with CF who have persistent MRSA infection. Age: 12 Years and Older Mutation: No Mutation Requirement Fev1% Predicted: 40% or greater Number of Visits: 7 Length of Participation: 8 months ClinicalTrials.gov link: https://clinicaltrials.gov/ct2/show/NCT01594827

Jan

CFFC Facebook Posts – December 2018 – Part 2

For those who do not visit Facebook, here are the posts to the CFFC page for the second half of December. 12/16/2018 - The Program for Individualized Cystic Fibrosis Therapy – An exciting development in treatment protocol is being developed across our northern border. 12/17/2018 - I Know What I’d Do Without You – One of the toughest parts of being part of the CF community is dealing with the loss of a loved one or friend. This blog post presents a positive approach. 12/18/2018 - Specific Sweat Test Better Detects Kalydeco’s Effects on CFTR Function, Study Suggests – This study shows the possibility testing the effectiveness of CFTR modulator therapies. 12/19/2018 - 5 Things I Wish People Knew About My Life With CF – The first “thing” in this list is the emotional toll of CF. The remaining four items can contribute to that emotional toll. 12/20/2018 - Experimental findings support a connection between mucins in the lung and pulmonary fibrosis – This article (which is a bit dense) points to a genetic factor beyond CFTR that contributes to advanced lung disease. 12/21/2018 - Monday Morning Thoughts: Revolutionary Study in Patient Safety, Lea – Gunnar's blog pulls together a couple of themes from recent posts to our Facebook page. 12/22/2018 - Survey Opportunity: Exercise and Airway Clearance – Exercise is recognized as an important element of Cf treatment protocol. This survey being conducted by the University of Nottingham is investigating the balance between exercise and airway clearance techniques. 12/23/2018 -

Dec

Survey Opportunity: Exercise and Airway Clearance

The CF Foundation Community Voice team shared information regarding a new survey opportunity. Their announcement follows. The Evidence Based Child Health Group at the University of Nottingham is working with the CF community to help shape their research agenda. Recently, they asked the CF community to identify their top research priorities. One of these topics was, "Can exercise replace airway clearance techniques?" You can help begin to answer this question by sharing your experiences through their survey. The purpose of this survey is to delve deeper into the topic of exercise and airway clearance to identify more specific questions that can be answered by research. All survey answers are anonymous. If you are interested in this opportunity, please complete the survey by Saturday, January 5th, 2019 at 11:59 p.m., ET. Complete the Survey Please note that the CF Foundation is not involved with this project. For additional information or questions, please contact Sherie Smith at Sherie.Smith@nottingham.ac.uk. Best, The Community Voice Team

Dec

CFFC Facebook Posts – December 2018 – Part 1

For those who do not visit Facebook, here are the posts to the CFFC page for the first half of November. 12/01/2018- Wintertime with CF – Advice for cold weather is pretty much the same on the other side of the Atlantic; but it's always worth a reminder. 12/02/2018- As Both Patient and Scientist, I’m Putting Nature’s Medicine to the Test – A scientists (self-interested) look into natural medicines. 12/03/2018 - Teaching My Kids Hard Truths About CF – Despite (or maybe because of) CF, being a mom is a rewarding experience.  12/04/2018- Study Reveals How Cystic Fibrosis Affects Young Women’s Sexual Health – Speaking of moms and CF (see yesterday's post), this study reminds us of the difficulties women with CF face in becoming a mother. 12/05/2018- You’re Right To Be Frustrated With Inpatient Care – How does Gunnar's view of hospital stays compare to yours?  12/06/2018 – Christmas Ball 2018 – A reminder that the CF Christmas Ball will be held on ...

Dec

Active Community Voice Projects

CF Foundation's community Voice is looking for input on a variety of topics. Here is the text of their request. We wanted to make sure you were aware of the three Community Voice surveys that are currently open.  Please see below for more information about each project, as well as to participate. Patient-Centered Research Outcomes Opportunity: Needs Assessment SurveyRespond by: Wednesday, December 12 Help inform researchers from the University of Washington who are conducting a needs assessment to inform a new patient-engaged research training program for CF patients and caregivers, clinicians, researchers and other CF stakeholders. Needs Assessment Survey Impact Grant Topics Opportunity: 5-minute survey  Respond by: Friday, December 14 Help us better understand what types of programs would most benefit the CF community through the Impact Grants program and what the impact has been from past awardees. Impact Grants Survey Community Voice End of Year Survey Opportunity: End of Year Survey  Respond by: Wednesday, December 19 Help us prioritize how to improve Community Voice in 2019! End of Year Survey For questions or more information, please email communityvoice@cff.org

Dec

Clinical Trial Alerts – December 2018

Cystic Fibrosis Foundation distributed the following clinical trial updates in December. Click the trial title to get more details. OPTION: Study of AzurRx MS1819 in people with cystic fibrosis and exocrine pancreatic insufficiency who are 18 years and older Status: Enrolling Description: This trial will look at the safety and effectiveness of the drug MS1819 as a pancreatic enzyme replacement therapy. Age: 18 Years and Older Mutation: No Mutation Requirement Fev1% Predicted: 30% or greater Number of Visits: 10 Length of Participation: 11 weeks ClinicalTrials.gov link: https://clinicaltrials.gov/ct2/show/NCT03746483 OPTIMIZE: Phase 3 study of tobramycin solution for inhalation with and without azithromycin Status: Completed with results Description: This study evaluated the effect of treatment with tobramycin inhalation solution (TIS) with and without azithromycin in people with CF who had their first isolation of Pseudomonas aeruginosa (Pa) from a respiratory culture (or their first culture after being negative for Pa for at least 2 years). Age: 6 Months to 18 Years Mutation: No Mutation Requirement Fev1% Predicted: No FEV1 Limit Number of Visits: 8 Length of Participation: 18 months ClinicalTrials.gov link: https://clinicaltrials.gov/ct2/show/NCT02054156

Dec

CFFC Facebook Posts – November 2018 – Part 2

For those who do not visit Facebook, here are the posts to the CFFC page for the second half of November. 11/17/2018 - New Test of Mucus Properties May Help with Coughing and Airway Clearance in CF – If you have to cough, you want it to be effective clearing the mucus in your lungs. This research may help with that. 11/18/2018 - Rethinking Our Reactions to ‘Five Feet Apart’ - The movie “Five Feet Apart” has generated a lot of debate . Today and tomorrow, we will present views from each side f the discussion. Today's link is on the pro side. 11/19/2018 - “Five Feet Apart” is a Dangerous Misrepresentation - The movie “Five Feet Apart” has generated a lot of debate . Yesterday and today, we are presenting views from each side f the discussion. Today's link is on the con side. 11/20/2018 - Hypertonic saline may help babies with cystic fibrosis breathe better – Adults have found benefits from hypertonic saline and now those benefits have been proven for infants. 11/21/2018 - Learning Not to Compare Myself to Others When Setting Goals – A reminder to distinguish between setting your own goals and being driven by the goals of others. [BTW: The advice to stay away from social media does not apply to following the CFFC Facebook and Twitter pages. ;-) ] 11/22/2018 – Happy Thanksgiving. You just have to review the prior posts about treatment advances and individual success stories to see how much we have to be thankful for. 11/23/2018 - CF Roundtable Autumn 2018 Issue – A little later than usual but still worth the read. 11/24/2018 - New Tissue-specific Delivery of CRISPR/Cas9 Aided by Moth Virus and Magnets, Study Shows – Who knew that a moth virus and magnetic particles may be a path to target gene editing. 11/25/2018 - Navigating My Newlywed Life With CF – Just like every other aspect of life, marriage with CF has it's unique challenges. 01/26/2018 - Nutritional Well-Being After Transplant Measure of Likely Lung Health, Study Finds – The importance of attention to nutrition doesn't end with lung transplantation. 11/27/2018 - The role of social media in the CF community and how it relates to healthcare provider relationships – Social media is playing a bigger role in ...

Nov

CF Roundtable – Autumn 2018 Issue

The Autumn 2018 edition of the CF Roundtable quarterly newsletter was just released by United States Adult Cystic Fibrosis Association, Inc (USACFA). You can download the current issues here: http://www.cfroundtable.com/newsletter/download-your-newsletter/ The contents of the current issue are described in the Editor's Comments presented below. If you are receiving this newsletter later than you expected, I apologize. I was suffering from what I call “brain freeze.” I would work on things for a little while and then I would just be unable to continue. I guess I was feeling the effects of age and season change. Again, I apologize. Once again we have some changes to the Board of Directors. Mark Levine has left the board. We thank him for his service. We welcome a new director, Jessika Biele. You may read her bio on page 18. I hope you have read the article on the cover. It is an interesting article by Roberto De La Noval that deals with fear and health. In this issue we introduce a new column called “Savoring Serendipity.” David Tarnow tells of a life-changing incident in his life and how he has used it to improve his living. Our Focus topic in this issue is: Changes We Experience As We Age. Jessika Biele writes of turning 30 and how it affected her. Jeanie Hanley speaks of understanding her body better and learning how to use that knowledge. Linda Stratton writes of moving to a new environment and adjusting to it. I discuss changes both good and not so good in “Speeding Past 50.” As usual, Laura Tillman has compiled a wonderful column of “Information From The Internet” for us. You’ll find much interesting news there. In “Spirit Medicine” Isabel Stenzel Byrnes writes of reaching one’s full potential. Julie Desch writes of survivors’ guilt in “Wellness.” Laura Mentch and Jeanie Hanley report on the 32nd Annual CFRI National CF Family Education Conference. Each of them gives us a peek into what the conference offered and how others can benefit from attendance at it. The “Poetry Corner” has a poem by Grace Knight, who tells of her battles of life with CF. On page 35, there is an invitation to participate in The Cystic Fibrosis Reproductive And Sexual Health Collaborative (CFReSHC). They are looking for some specific kinds of people. Please read about what they are looking ...