Author Archive


Clinical Trial Alerts – April 2019

Cystic Fibrosis Foundation distributed the following clinical trial update in April. Click the trial title to get more details. April 1, 2019 Phase 3 study of lumacaftor/ivacaftor (Orkambi®) in babies with two copies of the F508del CFTR mutation (Part B) Status: Enrolling Description: This study is taking place at multiple care centers across the U.S. It will evaluate the safety of the drug lumacaftor/ivacaftor (Orkambi®) and its effect on the body. It is for babies ages 1 to less than 2 years old who have cystic fibrosis and two copies of the F508del CFTR mutation. Age: 1 Years to 2 Years Mutation: Two Copies F508del Fev1% Predicted: No FEV1 Limit Number of Visits: 11 Length of Participation: 38 weeks link:


CFFC Facebook Posts – April 2019 – Part 1

04/01/2019 - -What I Wish People Knew About Lung Transplants – Some thoughts from a person waiting for a transplant. 04/02/2019 – Thank you Dansville Pre-K – This is the kind of story we love to share. CFFC is honored to be the beneficiary of this project. 04/03/2019 - I Work Next to CF Experts, and I Know They Really Care – A reassuring message from someone who works with the folks advancing our knowledge of CF. 04/04/2019 - Jack Goodwin: The Handbook For How To Date Someone With CF – This writer's “wish I had known” story points out the feeling of isolation that may be experienced by those coping with CF. 04/05/2019 - Organ Donation and Cystic Fibrosis – April is the second most important month for educating the community at large about CF. (May is CF Awareness Month, April is Organ Donation Awareness Month). Here are some thoughts on this topic from the Canadian CF community. 04/06/2019 - Virus that Infects Bacteria Turns Immune Response Away from P. aeruginosa, Study Shows – This article not only contains interesting information about the relationship between bacteria, viruses and your immune system, but it also raises the possibility of a vaccine to inhibit Pseudomonas. 04/07/2019 - CF Foundation Joins Amicus Brief in Support of Critical Patient Protections and Coverage Expansion – This is a big deal and it's good to see that there are many organizations working on this issue. 04/08/2019 -


Thank You Dansville Pre-K

Wednesday, March 20th, was one of those days that fills us with gratitude for the support we get from the extended CF community. That was the day for the formal presentation of the project conducted for the benefit of CFFC by the Pre-K classes at Dansville Central School. The project was selected by the class as part of the school's 100 Days celebration (recognizing the first 100 days of school). . With the help of their teachers, the kids assembled 100 Clinic Baggies for distribution at the pediatric CF clinic at Golisano Children's Hospital. The standard clinic baggie consists of a parking pass for the Strong Hospital garage, a granola bar and a sunny message from CFFC. The Dansville kids enhanced the baggies by creating cards to lighten up the anxiety that can be associated with clinic visits.                     The idea came from teacher Jessica Barber whose son has CF. She has acknowledged the lift they feel when getting the clinic baggie; she appreciates the parking pass while her son enjoys the snack. The assembly process is not difficult; however, this assist from the Pre-K classes provides an appreciated “vacation” from the chore. The icing on the cake was the fund raising associated with the project. The kids contributed spare change and encouraged contributions from others for a total of $185.44. When you receive a Clinic Baggie at your next appointment, say a quiet “thank you” to Jessica, her teaching partners (Brittney Rowe, Chris Spoor and Megan Baumgardner) and all the kids in the Dansville Pre-K classes.


CFFC Facebook Posts – March 2019 – Part 2

For those who do not visit Facebook, here are the posts to the CFFC page for the second half of March. 03/16/2019 -Living with an unpredictable disease – Many can probably relate to these stories of CF's unpredictability. 03/17/2019 - The 3 Words I Want Every Single Hospital Employee to Hear – This mother is channeling thoughts we have all had. “Please just listen.” 03/18/2019 - Determining what binds to mucus – This may not be a glamorous scientific pursuit but it could be critically important to CF treatments. 03/19/2019 - Connections Winter 2019 – Cystic Fibrosis Canada publishes a quarterly newsetter. While some of the articles are Canada-specific, you may find some to be relevant and interesting. 03/20/2019 - Virus Can Help Treat Pseudomonas aeruginosa in CF, Study Suggests – The use of bacteriophages has been previously reported. This study extended analysis to live a live animal model. 03/21/2019 - Let’s Talk About It: Complementary and Alternative Medicines and Supplements – A very thoughtful approach to considering treatment options outside the “normal” routine of medications. 03/22/2019 - Agenda Set for Education Day 2019 – Here's the news you have been waiting for: the full program for Education Day. This article also includes a link to on-line registration. 03/23/2019 - Amphotericin Holds Promise as Treatment for All CF Patients, Preliminary Study Shows – This approach to replacing the CFTR function in lung lining cells could work for all mutations. 03/24/2019 -


Three Survey Opportunities

CFF Community Voice recently distributed the following three announcements seeking participation in surveys. Please note the deadlines for participation. Complementary and alternative medicines in CF care Respond by: Wednesday, April 3, 2019 at 11:59 p.m., ET A team from the University of Arizona is conducting a survey about perspectives regarding complementary and alternative medicines (CAM) in CF care. They want to hear from the CF community – adults with CF and ALL caregivers of persons with CF (including but not limited to, parents, spouses/partners, other family members). To learn more about the survey and participate, please click the link below by Wednesday, April 3, 2019 at 11:59 p.m., ET. Upon completing the survey, participants will have the option to enter a raffle for an Amazon gift card. 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 Thank you for your time and consideration! Warmest regards from the project team at the University of Arizona: Melanie Lam, PharmD; Stephanie Bradshaw, MS, RD; Kalia Anderson, PharmD Candidate; Kelly Jackson, MS, RD Respiratory Equipment Access Respond by: Monday, April 8th, 2019 at 11:59 p.m., ET The CF Foundation has recognized that significant barriers exist for patients to get nebulizer compressors that are sturdy enough to handle the inhaled medicines that are needed for CF care. It has also been reported that problems exist with getting enough nebulizer cups. A team has been formed that is working to identify and address these challenges. Please consider taking the time to answer the survey below. Your answers will help to show what people living with CF experience with this type of respiratory equipment. If you are interested in participating in the survey, please click on the link below and complete the survey by Monday, April 8th, 2019 at 11:59 p.m., ET. Please feel free to share this opportunity with others who might be interested in participating. If you have any questions, don't hesitate to contact us at CF care Respond by: Tuesday, April 9 at 11:59 p.m., ET The CF Foundation would like to understand what you do to manage your CF in order to live your life. We are looking for specific examples to inform how we talk about CF care so that it looks more ...


39th Annual Kit Taylor Memorial Lecture

We're just a couple weeks away from the 39th Annual Kit Taylor Memorial Lecture. This year's lecture will be presented on April 9, 2019 at 7:30 PM. Details are presented in the 2019 Kit Taylor Flyer.pdf. Andrea Kelly, M.D., MSCE will be speaking on "The Intersection of Cystic Fibrosis & Endocrinology.” Dr. Kelly is Associate Professor of Pediatrics, CE Perelman School of Medicine of University of Pennsylvania. In addition to her education responsibilities, Dr. Kelly provides CF related diabetes sessions at the Children's Hospital of Philadelphia. The lecture will once again be held in the Kaplan Room at Golisano Children's Hospital. From the Strong Parking Garage, head towards the gift shop and you will see signs directing you to the Kaplan Room. Parking passes will be provided to all attendees. For those who cannot, or prefer not to, attend in person, the lecture will be live streamed. On the night of the lecture, you will find a link to the broadcast at Refreshments will be provided. (If this year is like previous years, save room for dessert!) There is no charge for the lecture thanks to the support provided from the Kit Taylor Memorial Fund. The Kit Taylor Memorial Lecture is a unique opportunity to gain understanding on a specific aspect of life with CF from nationally recognized leaders in their field of expertise. As the adult CF population increase brings new challenges like CF related diabetes, this year's topic is timely. We hope you can find the time to join in the lecture - either in person or virtually.


Agenda Set for Education Day 2019

The CFFC Education Day Committee wrapped up the details for the program on June 9th. The key new element in the plan is designating the topics for the discussion groups. Based on the feedback we received in the on-line survey, three discussion groups will be offered to deal with the following topics: Building your care team: family and providers Taking care of all of you: life style, nutrition, exercise, managing stress, etc. Supporting someone you love: how to give - and get - support The committee also finalized the schedule for the day with the goal of allowing the time needed for the program components without using up all of your Saturday. Here is the program layout: 9:30 - 10:30: Welcome and registration. This will give you time to chat with your peers and visit with the sponsors. We will be providing pastries, breads, yogurt, juices, coffee and water. 10:45 - 11:45: Keynote presentation by Jerry Cahill 12:00 - 12:45: Lunch of flatbreads, Korean cauliflower, assorted sandwiches, pesto pasta, soft drinks and water. This break will provide another opportunity to mingle with attendees and sponsors. 12:45 - 1:30: Breakout discussion groups. Does this information get you revved up for Education Day? Then, why not visit our on-line registration to let us know you're coming and tell us which discussion you will join. You can find the registration form here: While CFFC is sensitive to cross-infection concerns, the event is open to everyone in our CF community. We have adopted a CFFC and Infection Prevention protocol to manage the risks. Click the link to learn more.


Clinical Trial Alerts – March 2019

Cystic Fibrosis Foundation distributed the following clinical trial update in March. Click the trial title to get more details. March 11, 2019 Study to evaluate inhaled molgramostim in adults 18 years and older with cystic fibrosis Status: Enrolling Description: This study will look at the effectiveness of the inhaled drug molgramostim, a drug intended to treat infections in the lung. Age: 18 Years and Older Mutation: No Mutation Requirement Fev1% Predicted: 30% or greater Number of Visits: 19 Length of Participation: 72 weeks link:


CFFC Facebook Posts – March 2019 – Part 1

03/01/2019 – Two Opportunities for Input – Share your views on medication education and advisory councils. The medication education survey has a deadline of 3/12 and the advisory council focus group inquiry has a deadline of 3/2. 03/02/2019 - Low-dose Antibiotics Preserve Airway Bacterial Diversity, but at a Cost, Study Finds – This study demonstrates the complexity in setting antibiotic dosage. It also shows the diversity of treatment protocols even within a single institution. 03/03/2019 - How Color-Coding a Calendar Helped Me Decide When To Get Listed For a Lung Transplant – This blog deal with the second difficult decision regarding lung transplant. The first, of course, is whether you will consider transplant at all. The author does a good job describing the balance of objective and emotional factors. 03/04/2019 - In Case of Emergency – Some tips for providing essential information in the event you are unable to communicate directly. 03/05/2019 - European HIT-CF Project to Explore ELX-02 as Treatment for Rare CF Mutations – This article serves as a reminder that important research happens outside the US. 03/06/2019 - A complex array of drugs lie in wait for the future of cystic fibrosis drug treatment – This brief article from the UK's Cystic Fibrosis Trust offers a good overview of the complexities in finding the appropriate mix of CFTR modulators for an individual. 03/07/2019 - Watch the Vlog: 2 Sisters Talk Five Feet Apart – Trailers for the Movie “Five Feet Apart” are now being run on network TV. This blog post links to ...


CFFC Facebook Posts – February 2019 – Part 2

For those who do not visit Facebook, here are the posts to the CFFC page for the second half of February. 02/16/2019 - Tobramycin Fights P. aeruginosa Bacteria That Impair CFTR Function, Study Says – You may feel better with Toby treatments and this study explains why. 02/17/2019 - Love and Marriage and CF – A couple of days late, but here are some spouses' thoughts on marriage and CF. 02/18/2019 - Redefining the Definition of Wellness – Here's a good look at self-awareness and personal goal setting. 02/19/2019 - An Open Letter to the ‘How Are You Feeling?’ Folks – How do you handle the well-intentioned questions into your health? 02/20/2019 - Setting a New Goal, 1 Year and 3 Days – While the title points to goal setting, this blog is really about self awareness and team work. 02/21/2019 - The unique challenges of caregiving – How do these perspectives on caregiving compare to yours? 02/22/2019 - Hyperbaric Oxygen Treatment May Make Antiobiotics More Effective Against P. aeruginosa Infections, Study Says – More evidence that combined treatments may hold the answer for combating chronic infections. 02/23/2019 - 5 Tips for Helping Prepare Your Child for a Medical Procedure – This couple has found ways to better manage their son's interaction with the CF professionals. 02/24/2019 - Jerry Cahill - Keynote Speaker at CFFC ...