Author Archive

Mar

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: https://www.surveymonkey.com/r/LL2MP3Q 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.

Mar

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 ClinicalTrials.gov link: https://clinicaltrials.gov/ct2/show/NCT03597347

Mar

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 ...

Feb

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 ...

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 ...