Author Archive

Feb

Two Opportunities for Input

CFF's Community Voice recently circulated two calls for input from the CF community; one is a survey and the other is for focus groups. The announcements are set out below. Medication Education in CF Care Survey A team from the University of Arizona is conducting a survey about medication education in CF care centers. This survey is designed to help inform the CF community about perspectives regarding medication education for persons with CF and their families. For this project, they are specifically evaluating perspectives from adult persons with CF, caregivers of children with CF, and CF care teams (pharmacists, providers (MD, NP, PA, etc.), and nurse/nurse coordinators). To learn more about the survey and participate, please click the link below by Tuesday, March 12th at 11:59 p.m., ET. Upon completing the survey, participants will have the option to enter a raffle for an Amazon gift card. Complete Survey Please note the Cystic Fibrosis Foundation is not involved in this project. For additional information or questions please contact the Principal Investigator, Hannah Phan, PharmD, at hphan@pharmacy.arizona.edu. Thank you for your time and consideration!     Warmest regards from the project team at the University of Arizona, Hanna Phan, PharmD, FCCP, FPPAGDavid Seto, PharmD StudentJill Romero-Aleshire, PharmD StudentTyler Eastep, PharmD StudentAmanda SharpeElizabeth Hall-Lipsy, JD, MPHAnne Bowen, PhD   Patient-Family Advisory Board/Councils - Virtual Focus Groups The CF Foundation will be hosting a series of virtual focus groups about patient-family advisory councils/boards in order to learn more about what these groups currently look like in the CF community and what they could look like in the future. If you are a parent of someone living with CF and would like to share your thoughts on these groups, please sign up today. Please note that past participation in an advisory group is not required; anyone is welcome to join. If you are interested in participating in a focus group or would like to provide feedback via email, please fill out the brief interest survey below by Sunday, March 3rd at 11:59 p.m., ET. Take Interest Survey Thank you for your time and consideration. Best,Kelsey FredkinSr. Specialist, Community EngagementCystic Fibrosis Foundation

Feb

Jerry Cahill – Keynote Speaker at CFFC Education Day

CFFC is pleased - and excited - to announce that Jerry Cahill will be the keynote speaker at this year's CFFC Education Day (June 8, 2019). Jerry's positive outlook on life with CF is reflected in his "You Cannot Fail" program. Here's Jerry's biography as shared on the CF Foundation web site. Jerry was diagnosed with cystic fibrosis in 1967 at the age of 11. Currently a CF Ambassador at the Boomer Esiason Foundation (BEF), Jerry leads its scholarship and grants division and is the founder of Team Boomer -- the athletic arm of BEF dedicated to encouraging exercise among CF patients while simultaneously raising money for scholarships. He has also started the program You Cannot Fail, which includes apparel, a website, an autobiographical coffee table book, and two children's books. On top of all of this, he records educational podcasts and videos and encourages other people with CF to share their stories on Club CF. He has completed two 500-mile “Bike to Breathe” bike tours. Jerry believes that exercise is the single most important thing in his life that keeps him healthy with CF. Follow Jerry on Jerry Cahill's Cystic Fibrosis Podcast. We are discussing the focus of the keynote address with Jerry but you can be assured that it will be inspirational. We will provide an update on the topic on the Education Day calendar page. In addition to the keynote, Jerry will offer a copy of his book "You Cannot Fail" to the first 50 registrants. Check the Education Day calendar page to details on times and location. that page will be updated regularly as the program is finalized.

Feb

CFFC Facebook Posts – February 2019 – Part 1

For those who do not visit Facebook, here are the posts to the CFFC page for the first half of February. 02/01/2019 - 8 Essential Items for Long Hospital Stays - This list may be familiar to hospital “veterans” but could be useful to those who do not have a lot of hospitalization experience. The last item on the list (cash for coffee) is exactly why CFFC includes a stipend in our hospital help packets. 02/02/2019 – ReserchCON – The CF Foundation is offering a virtual conference for CF families interested in the current state and future of CF research. This CFFC calendar entry contains links to program details and registration. 02/03/2019 - Link Found Between P. aeruginosa Infection and Disease Severity in CF Patients, Study Reports – An interesting subtext: the absence of Pseudomonas may be related to the absence of a F508del mutation. 02/04/2019 - For The First Time in 15 Years, I Didn’t Suffer a Pulmonary Exacerbation – Gunnar shares his ideas on what goes into improved health. 02/05/2019 - Hypertonic Saline Activates Neurons that Contribute to Airway Surface Liquid Production in CF, Study Suggests – More basic science that can improve CF treatments. 02/06/2019 - Coping With the Loss of My Brother to CF – This blog piece not only talks about coping with loss, but also provides a glimpse of how much the CF world has changed over the last few decades. 02/07/2019 - Poor Diet Quality Linked to Body Fat Distribution ...

Feb

CF Roundtable – Winter 2019 Issue

The Winter 2019 edition of the CF Roundtable quarterly newsletter was just released by United States Adult Cystic Fibrosis Association, Inc (USACFA). The primary focus of this issue is organ transplantation. You can download a PDF version of the current issues here:  http://www.cfroundtable.com/newsletter/download-your-newsletter/ If you prefer an online version, go here:  http://www.cfroundtable.com/online-newsletters/ The contents of the current issue are described in the Editor's Comments presented below. Well, hasn’t 2018 been an up-and-down year? I hope that it has been mostly an up year for you. I believe that most of us have experienced weather that was strange with low temperatures one day and amazing heat the next. Of course, we all know that the stock market has been taking wild swings. Food prices continue to climb and medicines keep getting more expensive. I’m ready for a change, aren’t you? As the year draws to a close, we take another look at organ transplants. We have articles about transplants and the processes involved from A. Whitney Brown and Martha S. Markovitz, LCSW. Each of them brings to the discussion a new perspective from a professional point of view. We also have Focus articles from Colleen Adamson, Aaron Cunningham, Brad Dell, Elyse Elconin-Goldberg, Renee Fahrner, Lara Govendo, Zach Hayes, Tré LaRosa, Rima Manomaitis, Katy Starck Monte, Marissa Parks, Ashley Pearce and Alexia Stansbury. Some have had one or more transplants, others have not had one, while others have written about the process of getting listed or how someone else’s transplant journey affected them. There is much good information contained in these articles. Isabel Stenzel Byrnes talks of transplant and trauma in “Spirit Medicine.” Andrea Eisenman uses “Transplant Talk” to tell of how she gets help from her friends with CF who have had transplants. I write, in “Speeding Past 50,” of how we can help others who are having transplants. Be sure to check out the “Poetry Corner” on page 44 where Elizabeth Honan Amber writes about Gratefulness. As always, Laura Tillman has compiled a lot of helpful information for us in “Information From The Internet.” “In The Spotlight” features Micah Baker and his experience with Mycobacterium avium complex (MAC). Molly Pam uses the “Family Matters” column to write of talking about illness with children. “Ask The Attorney” finds Beth Sufian writing about the Affordable Care Act and the Ticket To Work program. There are interesting items ...

Feb

Clinical Trial Alerts – February 2019

Cystic Fibrosis Foundation distributed the following clinical trial updates in February. Click the trial title to get more details. February 1, 2019 GI symptoms observational study (GALAXY) Status: Enrolling Description: This study will collect information on gastrointestinal (GI) symptoms that people with CF experience. Age: 2 Years and Older Mutation: No Mutation Requirement Fev1% Predicted: No FEV1 Limit Number of Visits: 1 Length of Participation: 29 days ClincalTrials.gov link: https://clinicaltrials.gov/ct2/show/NCT03801993

Feb

CFFC Facebook Posts – January 2019 – Part 2

For those who do not visit Facebook, here are the posts to the CFFC page for the second half of January. 01/16/2019 - New Inhaled Carrier May Work for CF mRNA Therapy, Mouse Study Finds – This research indicates that scientists may have found the answer to the major challenge to gene therapy: safe devlivery of the corrective genetic material. 01/17/2019 - Why My CF Clinic Visits Are a Family Affair – When we become adults, we revel in our independence. This blog reminds us that even adults benefit from another voice and listener with us. 01/18/2019 - The Financial Stress of Being Chronically Ill – It's not like you need to add to the list of CF challenges but understanding the scope of the difficulties is necessary to conquering them. [BTW: The personal perspectives come from Canada where they have national health insurance that covers pre-existing conditions.] 01/19/2019 - Immunotherapy May Be Promising Strategy to Treat Chronic Infections of P. aeruginosa in CF Patients – This research points to a strategy to rebuild your natural immune response for infections. 01/20/2019 - 4 Times I Have Prevented Medical Mistakes – The important message in this blog is not the specific instances; it's knowing the details of your treatments and advocating for them. 01/21/2019 - CF Is Unpredictable -- Choose Friends Who Aren’t – The support network is a significant component of successful treatment. This blogger reminds us to thank your core supporters. 01/22/2019 - The Diverse Spectrum of Health Across the CF Community – There's nothing new in this article if you a familiar with CF, but it is a good summary of the environment we live in. 01/23/2019 - Monday Morning Thoughts: I Have a Cold – Here's one approach to dealing ...

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 January 24, 2019 Study of SPI-1005 in people with CF ages 18 and older Status: Enrolling Description: This study will test the safety and tolerability of SPI-1005, a drug intended to prevent and treat hearing loss caused by aminoglycosides. Age: 18 Years and Older Mutation: ...

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

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 -