Author Archive

Feb

CFFC Facebook Posts – February 2020 – Part 1

02/01/2020 - Learning That CF Isn’t My Fault – This blog is an example about how complicated sustaining mental health can be. 02/02/2020 - S. pseudopneumoniae Bacteria Can Cause Pulmonary Exacerbations in CF Patients, Study Finds - You don't really need additional problems to worry about, but identifying a problem is the first step toward solving it. 02/03/2020 - The Harvest: Transitioning to life with Trikafta – We don't want to be repetitive, but it's likely that you can't get too many Trikafta stories. 02/04/2020 - Day 4 – Trikafta Power – Yes, another Trikafta post, but this one is special. It's observations shared by CFFC past-president Kori Tolbert Doherty! 02/05/2020 - CF Roundtable - Winter 2020 – The latest edition of CF Roundtable focuses on insurance issues. 02/06/2020 - Chronic Pain, Depression, and Anxiety in the CF Community – A thoughtful discussion about a subject that needs thoughtful discussion. 02/07/2020 - Research blast on gene editing – In their unique way, UK's Cystic Fibrosis Trust provides a primer on gene editing. 02/08/2020 - My (Almost) Liberation from Recurrent Cystic Fibrosis Clinic Visits – While this starts out like another Trikafta success story, this blog post from Gunnar Esiason takes a thoughtful look at the dual purposes of clinic visits. 02/09/2020 - Research Sets Out to Identify Mechanisms of Dormant, Antibiotic-resistant Bacteria – This research may find the answer to recurring exacerbations. 02/11/2020 - Poor Gut Microbiota in Infants with CF Linked to Stunted Growth in 1st Year of Life, Study Suggests – The information in the headline may seem obvious, but it is helpful when science adds the ...

Feb

CF Roundtable – Winter 2020

United States Adult Cystic Fibrosis Assn has issued the Winter 2020 edition of CF Roundtable. The focus topic of the Winter issue is insurance and there are many other informative articles. You can access CF Roundtable in two formats. Just click the appropriate link below. Online Version PDF version The Editor's Notes gives you a good overview of the issues contents. Happy New Year from all of us at CF Roundtable! Our focus topic this issue tackles the complexities of insurance battles we all face in managing CF. On our cover, our President, Beth Sufian, high-lights what self-insured group health benefit plans are and how they could potentially hinder access to care for individuals with CF. Jeanie Hanley shares a horrifying story involving a drone spy. Lora Moserwrites about her battle with coverage through her Healthwell grant. In her column, “Speeding Past 50,” Kathy Russell shares her insights on security relative to health and insurance. Leah Sands reminisces about the huge learning curve and responsibility in taking care of her own insurance as a teen. In her wellness column, Julie Desch breaks down anxiety and the importance of using various tools, such as mindfulness, to work through it. In this issue, Isabel Stenzel Byrnes talks about setting goals in her column “Spirit Medicine.” Molly Pam discusses potential insurance pitfalls and things to consider when starting down the fertility path in the Family Matters column. Kat Porco writes about the effect of Trikafta in blood sugar management in her CFRD Education column. In his column, Mark Tremblay writes about emotional exacerbations and what they look like in CF. As always, Laura Tillman does a wonderful job compiling all the latest research and information about CF from the internet. In our “Voices From The Roundtable” section, Linda Strattonshares her perspective as an “elderly” CF patient starting Trikafta along with one of her original poems. Colin Maydahl poses the question “what will you do now that you’re on Trikafta”? In our column, “In The Spotlight,” read about how Lorena Wood’s life was shaped by her having CF and her challenges and joys of being a missionary. CF Roundtable couldn’t happen without the board of directors and the help, support, and commitment of everyone in the community, espe-cially our donors. As we start off 2020, we’d like to extend our ...

Jan

CFFC Facebook Posts – January 2020 – Part 2

01/16/2020 - Approaches Like Yoga, Along with Meds, Key to Managing CF Pain, Experts Say – Pain management is possibly under reported as a component of CF care. This article gives more insight into the issue. 01/17/2020 - Trikafta Up Close and Personal – More information on the Trikafta experience but this time with some local connections: former CFFC president Kori Tolbert Doherty and current director Anne Governor. 01/18/2020 - New Lung Clearance Index package to boost access to trials – The improvements in overall health in the CF community generates changes in the medical community. Including clinical trials. For example, UK's Cystic Fibrosis Trust is investing in more precise lung function measurement. 01/19/2020 – Announcing Tune Up Tins – In case you missed the original announcement in the flurry of holiday activities. 01/20/2020 - Organ Care System Used at Florida Hospital Expected to Make More Lungs Suitable for Transplant – A system that extends the viability of organs fr transplant is not only good news for recipients, but it also gives donors the assurance that their gift will not be in vain. 01/21/2020 - That Time a Healthcare Provider Accused Me of Being a Drug User – While the story is scarily interesting (or interestingly scary) in its own right, there is an underlying message of advocacy, particularly having an advocacy buddy when you're too sick to speak for yourself. 01/22/2019 - Basics of Lung Care – As indicated in the title, this is very basic information which “veterans” are likely to know; however, a refresher may be useful and it may help you explain the importance of lungs to your family and friends. 01/23/2020 - CF Infertility: A Masculine Perspective – Another aspect of CF that doesn't get much exposure. 01/24/2020 - ...

Jan

Trikafta Up Close and Personal

Of course, the CF community is all abuzz with the news about Trikafta. As with such significant advances, the focus is on the benefits and promising future. But there is more to the story. That same thought occured to Kori Tolbert Doherty, the past president of CFFC. She wanted to investigate the full picture while she is clearing up some other issues that will allow her to be a user of Trikafta. Kori being Kori, however, she wanted to share her investigation with the broader CF community. The result of curiosity plus caring produced a YouTube video in which she interviews three women about their Trikafta experiences. She chose people she knew but was careful in selecting acquaintances with different backgrounds and different CF histories. You can watch the video here: https://www.youtube.com/watch?v=CkGM0LuL_WY Kori's discussion partners are: Julie Desch - Julie maintains the website Sick and Happy (http://www.sickandhappy.com) and has produces her own course, “Living Mindfully With Cystic Fibrosis.” She also volunteers extensively with Cystic Fibrosis Research, Inc. (CFRI) where she authors the Mindfulness column in the CF Roundtable  newsletter. Somer Love - Somer created the web site Love to Breathe (http://www.lovetobreathe.com/). She is an active advocate in the CF community and regularly contributes posts to the Cystic Fibrosis Foundation blog. Anne Governor - Anne is another local connection: she is a CFFC director. One of her claims to fame is her appearance on Good Morning America, but we know her as the loving mother of two beautiful girls.

Jan

CFFC Facebook Posts – January 2020 – Part 1

01/01/2020 - Top 10 Blog Posts of 2019 – Yesterday, we shared a forward-looking post. But the new year is also a time to look back. The Top 10 list from CFF's blog shows that, while people living with CF are concerned with maintaining their health, they have a lot of interest in raising CF awareness in the world around them. 01/02/2020 - Copeptin a Potential Biomarker of Symptom Severity During Pulmonary Exacerbation, Study Shows – If science can find indications of exacerbations without symptoms, treatments can be started sooner – and be more effective. 01/03/02020 - A Few (Realistic) Expectations for the Next Decade of Cystic Fibrosis Care – Gunnar Esiason shares his vision of the the advance in the next decade. 01/04/2020 - 8 Ways to Guard Against Germs in Everyday Life – In the midst of cold and flu season, it is good to remind ourselves how to minimize the risks from exposure to germs. 01/05/2020 - Gene Variations May Explain Resistance to Lung Infections in Some CF Patients, Study Says – No surprise that genes other than CFTR can affect the progress of CF. 01/06/2020 - My Strict Schedule Gives Me Power Over My CF – There's nothing like success to inspire you to maintain your daily regimen. 01/07/2020 - How 'good' viruses may influence health – While this article does not deal specifically deal with CF, it is good background information for understanding research in phage treatments and other aspects of CF care. 01/08/2020 - 5 Ways My Quality of Life Has Improved on Trikafta – Yes, CF is different for everyone. That said, Gunnar Esiason's account of his experience with Trikafta is consistent with other stories you may have read or heard. 01/09/2020 -

Jan

CFFC Facebook Posts – December 2019 – Part 2

12/16/2019 - Proteostasis to Test Personalized Treatment with Novel CFTR Modulators in Europe – This article contains two piece of exciting news from Europe. First, potential CFTR modulators for rarer mutations. Second, the use of organoids to assess effectiveness before treatment starts. 12/17/2019 - Research that leaves no-one behind – More from Europe (this time Cystic Fibrosis Trust) on a range of efforts to solutions for rarer CFTR mutations. 12/18/2019 - Darcy’s Blog: A Mysterious Health Issue – An interesting story about … 12/19/2019 - Role Reversal: How I Balanced Caregiving as a CF Patient – While CF is a (the most?) significant aspect in your life, there are other demands that are important. 12/20/2019 - Chronic Kidney Disease Highly Prevalent in CF, Kidney Function Poorer in Transplanted Patients, Italian Study Says – Your are probably familiar the impact that antibiotics have on the kidneys. This study points to other CF-related factors that contribute kidney disease – and a recommendation for mitigating the risks. 12/21/2019 - CF rare mutations and the fear of being left behind – This blogger moderates some of the recent good news on Trifkafta. [NOTE: Cystic Fibrosis Foundation is committed to finding equivalent treatments for all mutations.] 12/22/2019 - Diet to Help Manage Glucose in CF Patients: A Nutritionist’s View – You may have had this conversation with a nutritionist: not all calories are good calories. 12/23/2019 - Realizing CF Didn’t Make My Goals Impossible – That time when you realize that Cf does not define you. 12/24/2019 - CF Newborn Screening Improves Weight and Lung Outcomes, but Has No Impact on ...

Dec

CF Foundation Virtual Events 2020

Cystic Fibrosis Foundation has set the 2020 dates for their virtual events and the events have been added to the CFFC calendar. Here's the announcement: Designed by adults with cystic fibrosis, family, clinicians, researchers and more, virtual events -- including our annual BreatheCon, CF FamilyCon, and ResearchCon -- provide the opportunity to connect, share, and learn through open and honest dialogue. Virtual events feature keynote panels, fun activities, group chats, and small-group video breakouts on issues that are unique to people living with cystic fibrosis and their families. Check out our upcoming events below and find out more about virtual events with CFF-Virtual-Events-FAQ.

Dec

Announcing Tune Up Tins

Cystic Fibrosis Family Connection is excited to announce the start up of a new program: the Tune-Up Tin! Tune-Up Tins are designed to give you a break from the routine and boredom that come with extended hospital stays in two ways. A good way to break routine is to get some refreshments that you won't find on the hospital menu (like chips, Gatorade, etc,). And there's nothing like puzzles, crafts or cards to beat back monotony. As much as we care for the CF community, we are not mind readers. That leads to the most important part of the program. We want you to tell us what to put in your Tune-Up Tin! Just send a quick email to: tuneup_tins@cffamilyconnection.org Include your name, date of admission, room number, a phone number and your favorite guilty pleasures (snacks, drinks, puzzle books, craft kits, magazine, etc.). Or you can simply submit the form at the bottom of this page. Once we get your email, we'll do our best to fill your request within our budget. Our goal is to personally deliver your Tune-Up Tin (similar to the one in this picture) within one day. That way, we can have a quick visit when we drop off your tin full of goodies. Another key element of this new program is that the Tune-Up Tin does not replace the Hospital Help Packet. You still get your parking passes! To begin, the Tune-Up Tins will only be offered to CFFC adult community members. Each adult with CF will be eligible to request a Tin for 2 hospitalizations per year. If all goes well, we hope to expand this opportunity to our pediatric patients. We look forward to starting this project and hope to introduce some cheer to your tune-ups! Feel free to send us an email if you have any questions. Love and Gratitude, CFFC Board Members

Dec

CFFC Facebook Posts – December 2019 – Part 1

12/01/2019 - IGF2R Blood Levels May Help Predict Antibiotic Response in CF Pulmonary Exacerbations, Study Says – Getting the right mix of antibiotics during a hospitalization can be tricky. This study points to a technique that could improve the process. 12/03/2019 - Running Outside Saved My Lung Health and Improved My Well-Being – This blogger encourages suggests that you can get more out of your treatment protocols by absorbing your environment. 12/04/2019 - The Family that ER's Together – The stories shared in this blog may seem all too familiar to you. 12/05/2019 - CFF Strives to Improve Lung Transplant Journey for Cystic Fibrosis Patients – This article discusses the evolution of the approach taken by Cystic Fibrosis Foundation regarding lung transplantation. 12/06/2019 - Funding to boost the development of new treatments – This article points to the international cooperation regarding improved treatments for CF. 12/07/2019 - Don’t Be Afraid to Let New Friends Into Your CF World – This blogger shares some advice about introducing new friends to your CF world. 12/08/2019 – Save the Dates – 2020 – Knowledge is an important tool in dealing with the realities of CF. Pull out your new 2020 calendar and mark the dates for two local opportunities to increase your understanding of life with CF. 12/09/2019 - Israeli, US Researchers Develop New Device to Eliminate Mucus Secretion from Obstructed Airways – This technology may not replace current clearance treatments, but it holds the promise of more complete clearance. 12/10/2019 - “We’re all in the same boat”: finding confidence through story-telling – This article describes how UK's CF Trust approached the challenge of building a peer community while maintaining infection control protocols. 12/11/2019 -

Dec

Clinical Trial Alerts – December 2019

Cystic Fibrosis Foundation issued the following clinical trial alerts in December. December 11, 2019 Study of VX-445 plus ivacaftor and tezacaftor in people with CF who have two copies of the F508del CFTR mutation Status: Completed with results Description: This study evaluated the effectiveness and safety of the CFTR modulator drug VX-445 (elexacaftor) in combination with ivacaftor and tezacaftor. This triple combination is known as Trikafta™. This study was for people with CF ages 12 and older who have two copies of the F508del CFTR mutation and were already taking tezacaftor plus ivacaftor. Age: 12 Years and Older Mutation: Two Copies F508del Fev1% Predicted: 40 to 90% Number of Visits: 7 Length of Participation: 10 weeks ClinicalTrials.gov link: https://clinicaltrials.gov/ct2/show/NCT03525548 Study of effectiveness and safety of elexacaftor/tezacaftor/ivacaftor in people with CF who have one copy of the F508del CFTR mutation Status: Completed with results Description: This study evaluated the effectiveness and safety of the CFTR modulator drug VX-445 (elexacaftor) in combination with tezacaftor and ivacaftor (ELX/TEZ/IVA). This triple combination drug is known as Trikafta™. This study was for people with cystic fibrosis ages 12 and older with one copy of the F508del CFTR mutation and one copy of a minimal function mutation. Age: 12 Years and Older Mutation: One Copy F508del Fev1% Predicted: 40 to 90% Number of Visits: 10 Length of Participation: 32 weeks ClinicalTrials.gov link: https://clinicaltrials.gov/ct2/show/NCT03525444 Phase 2 study of oral glutathione in children with cystic fibrosis Status: Completed with results Description: This study evaluated the safety and effectiveness of the oral glutathione in children with CF who use pancreatic enzyme replacement therapy (PERT). Age: 24 Months to 10 Years Mutation: No Mutation Requirement Fev1% Predicted: No FEV1 Limit Number of Visits: 4 Length of ...