Author Archive

Jul

Education Day 2021 FAQs

Q. When is Education Day? A. The event will be held on Wednesday, August 4th. The program will begin at 6:30 with introductions followed by the keynote presentation by Gunnar and Darcy Esiason. We will take a break to hear from our sponsors at 7:30. Darcy and Gunnar will be back at 8:00 to answer your questions with a wrap up by 9:00. Q. What is the theme of this year's program? A. We have titled this year's program as “Adapting to the Evolution of Care.” The simple title covers a lot of ground. The evolution in CF care includes new treatments (like Trikafta), resulting changes in life expectations, changes in an individual’s support system (like move from parent to self to significant other), and changes in the care team (like moving between centers or turnover in center staff). Cutting across all these aspects are the concepts of advocacy and mental health. Q. Where will Education Day be held? A. Wherever you are comfortable. Our 2021 edition of Education Day will be a virtual event presented using Zoom Webinar. Once you are registered, you will get a link that you can access from anywhere you have an internet connection. Q. How do I register for Education Day? A. Simply follow this link: https://zoom.us/webinar/register/WN_7e4E9Ll3TJC6hCc6pH1z7A. You will be asked to provide five pieces of information: first name, last name, email address, zip code and your relationship to CF. After completing the registration, you will receive an email with instructions for connecting to the event. You will also receive a reminder email the day before the event. NOTE: Your registration confirmation is your ticket to participate, so you must register in order to access the webinar. If additional people in your household want to participate on their own device, they should register separately. Registration will remain open right up to the start of the webinar. Q. How does a Zoom Webinar work? A. As an attendee, joining the webinar is pretty much like watching a TV show where you can see and hear the presenters, but they can't see or hear you. There are, however, a couple of differences. First, the host and panelists will be ...

Jul

CFFC Facebook Posts – July 2021 – Part 1

07/01/2021 - Researchers discover unique 'spider web' mechanism that traps, kills viruses – While not directly related to CF, this article points to a couple of factors in CF treatment. One, treatments are more effective when they are administered where disease enters the body. Two, you have to be alert to adverse side affects. 07/02/2021 - CF Inspired Me to Pursue Pre-Med – The CF community – including our local community – benefits from the support of people with no direct connection to CF. 07/03/2021 - Another (Fiscal) Year Wrapped Up – Money isn't everything but it is essential to keep CFFC operating. We have published our annual report for the year ended June 30th. 07/04/2021 - Low Aerobic Capacity Linked to Higher Risk of Exacerbations – Once again, a study has confirmed a common assumption: aerobic exercise can reduce hospitalizations and improve the long-term outlook. 07/05/2021- Advocating Alongside My Sister With CF – This blog focuses on Cystic Fibrosis Foundation's Teen Advocacy Day; however, the message of support within the family is an important one. 07/06/2021 - A Search and Rescue Mission into my Nuts – the Male Side of IVF with CF – A story of promise for men with CF who want to have a family. [BTW: This may be a topic that comes up when Gunnar and Darcy speak at Education Day on August 4th.) 07/07/2021 - Joint Disease More Common With P. aeruginosa Infection, Female Sex – Add joint disease to the growing list of ailments that become more prevalent in an aging CF population. 07/08/2021 - How We Dealt With Our Newborn’s CF-Related Bowel Problems – This is a bit of a horror story – difficult for any parent to read, but the outcome reminds us of the miracles delivered through quality health care. 07/09/2021 - New Strategy Corrects CF Splicing Defects in Lab Models – This research could bring us closer to therapeutics to correct the CFTR defect in lung tissue. 07/10/2021 - The ...

Jul

Education Day Registration Open

Adapting to the Evolution of Care, our 2021 Education Day program, is less than a month away - Wednesday, August 4th. We will be presenting the program through Zoom Webinar. If you don't have one already, you can get a free Zoom client prior to the event. You can now register for the event at: https://zoom.us/webinar/register/WN_7e4E9Ll3TJC6hCc6pH1z7A. Once the registration is completed, you will receive an email with the details for logging in to the program. As a reminder, our keynote will be presented by Gunnar and Darcy Esiason. They will share their observations on the evolution in CF care including: new treatments (like Trikafta), resulting changes in life expectations, changes in an individual’s support system (like move from parent to self to significant other), and changes in the care team (like moving between centers or turnover in center staff). After a break to hear from our sponsors, Darcy and Gunnar will be back to answer your questions. We're looking forward to an informative - and entertaining - evening. We hope you will join us.

Jul

Another (Fiscal) Year Wrapped Up

CFFC operates on a fiscal year that runs from July 1 to June 30. We have completed the annual report for the year ended June 30, 2021. You can review that report at CFFC Financial Statement 06302021. The statement shows a comparison of the last two completed years. As you might expect, the adjustments resulting from COVID-19 protocols had a significant impact on our finances. The biggest hit was felt on our revenues. In recent years, our most significant income has come from the sponsors of our Education Day program; therefore, the cancellation of the 2020 event left a hole on the revenues. Moving the 2021 Education Day to August 4, 2021 has the effect of deferring the associated revenues into the next fiscal year. Although we also cancelled the 2020 Living with CF Golf Tournament, our faithful sponsors graciously let us retain their contributions. The changes implemented for clinic visits and hospitalizations had an impact on the demand for Hospital Help Packets and pediatric Clinic Baggies, our two major expenses. We buy the parking passes in bulk, so the timing of those purchases may cause variations between fiscal years. The rates charged for parking at Strong is about double of what we pay for Highland passes which is the primary cause for the difference between pediatric and adult parking expenses. We are fortunate that the balances we have accumulated in prior years allowed us to continue our patient benefits despite the decreased revenues.

Jun

CFFC Facebook Posts – June 2021 – Part 2

06/16/2021 - Dealing With Ignorance When You Have CF – It would be pretty unusual if you haven't encountered a relative, friend or complete stranger who has made some off the mark comment because s/he doesn't understand CF. 06/17/2021 - Understanding and responding to the needs of diverse ethnic communities – This article describes the approach UK's Cystic Fibrosis Trust is taking to diversity (including religion, spoken languages, and cultural practices and beliefs). While the specifics deal with the programs in the UK, the observations are universal. 06/18/2021 - RNA-based Therapies Show Promise in Early Studies, ReCode Reports – This report is exciting, not only for the science, but also because it targets nonsense mutations which are not served by the current CFTR modulator therapies. 06/19/2021 - Scientists demonstrate promising new approach for treating cystic fibrosis – And the promising news keeps coming. This reports details another study that identified a technique to “fix” CFTR splicing errors where the current modulators are not effective. 06/20/2021 - Looking Back at the First Year After My Son’s CF Diagnosis – An appropriate message for Father's Day: the view from the father of a boy's first year of life 's with CF. 06/21/2021 – Back in the Swing of Things – After the unscheduled year off, CFFC is getting back in the swing of things with our Living with CF Golf Tournament. The linked page includes the tournament brochure and entry form. 06/22/2021 - How I Discovered That PTSD Was Causing My Post-transplant Struggles – This blog post has a couple of good lessons for dealing with major changes in your life. 06/23/2021 - Improving the digestive symptoms of cystic fibrosis – GI issues pose significant challenges to people living with CF. This article describes the steps being taken in the UK to improve GI health. The US population will ultimately benefit from this research. 06/24/2021 - Top 10 Tips for Road Trips With Your Child With CF – This blog contains some good observations as we approach the summer vacation ...

Jun

CFFC Facebook Posts – June 2021 – Part 1

06/01/2021 - David Van Beers: A Legacy of Hope – Inspirational stories of life with CF come from all over the world; this one comes from Canada. 06/02/2021 - Phage Therapy: Legacy of CF Advocate Mallory Smith Endures – Dramatic advances in treatments carry special meaning when they are associated with a name. 06/03/2021 - The Latest Books and Music From People With CF – If you want supplemental reading that involves CF (fiction as well as non-fiction), Cystic Fibrosis Foundation put together a list that my interest you. 06/04/2021 - Sildenafil Increases Exercise Capacity, Study Suggests – Exercise improves CF outcomes. This study offers an approach that may reduce strain of exercising. 06/05/2021 - Let’s Talk About the Invisible Battle of Mental Health – As this blogger suggests, you can't talk too much about getting care for your mental health as well as your physical health. 06/06/2021 - Waking just one hour earlier cuts depression risk by double digits, study finds – Yesterday, we posted about the battle with mental health. Today's article suggests that paying attention to your sleep cycle may help. 06/07/2021 - CFI Update: Public health measures for COVID-19 – This set of advice for returning to “normal” comes from Ireland; however, the common sense approach is universal. 06/08/2021 - 10 Years with My Feeding Tube – Gunnar Esiason shares the history of his feeding tube including the post-Trikafta adjustments. [BTW: Stay tuned for an update on Education Day – 8/4/21 – with Gunnar and Darcy Cunningham.] 06/09/2021 - Smartphone App Study to Assess How Trikafta Affects Daily Life – Important research also takes place outside the laboratory. This study will gather patient experiences to provide a “real life” picture of the outcomes associated with Trikafta. 06/10/2021 - Why Screen Time Can Be a Good Thing – This blogger offers his views on the pros and cons of our virtual world; especially the implications for the CF community. 06/11/2021 -

Jun

Adapting to the Evolution of Care

"Adapting to the Evolution of Care" is the theme of CFFC's 2021 Education Day event on Wednesday, August 4th. The theme is inspired by the blog posts of Gunnar Esiason and Darcy Cunningham, our presenters. If you want to study up, you can review their posts at http://www.gunnaresiason.com/. The simple title covers a lot of ground. The evolution in CF care includes new treatments (like Trikafta), resulting changes in life expectations, changes in an individual's support system (like move from parent to self to significant other), and changes in the care team (like moving between centers or turnover in center staff). Cutting across all these aspects are the concepts of advocacy and mental health. To do justice to such a broad topic, the program will be divided between a keynote presentation by Darcy and Gunnar followed by a Q&A session with them to go deeper into the areas that interest you most. The program will start with the keynote after a brief introduction at 6:30 PM. We will take a break from the main program at 7:30 PM when we will here from our sponsors. We will open the Q&A session at 8:00 PM with a wrap up targeted at 9:00. The big change from prior Education Days is the medium. To respect the goal of infection control (heightened by the COVID pandemic), this year's program will be virtual. We will be presenting the program through Zoom. Stay tuned for details about connecting to the event. We're looking forward to a program that is, in Gunnar's words, "a nice blend of educational and entertaining content."

Jun

CFFC Facebook Posts – May 2021 – Part 2

05/16/2021 - Fully Vaxxed and Shedding my Mask (Most of the Time) – Gunnar Esiason's reaction to the updated CDC COVID-19 guidelines. NOTE: Read the article, not just the headline, because there are significant “ifs” included. 05/17/2021- Molecular Analysis Identifies Key Differences in Lungs of People With Cystic Fibrosis – This research is part of the effort to find approaches to cellular correction that is not dependent on the mutation type. 05/18/2021 - I Made It to the Other Side – Despite the advances with CFTR modulators, transplantation is still the route some living with CF choose to take. 05/19/2021 - Lung function in children with cystic fibrosis in the USA and UK – Cystic Fibrosis Trust reports on an analysis coordinated with Cystic Fibrosis Foundation that compared data from their respective registries. The results suggest that the medications used in early childhood produced the difference in outcomes. 05/20/2021 - CF Didn’t Stop Me From My Dream of Becoming a Mom – This blog is about motherhood, but the perseverance can be applied to any dream. 05/21/2021 - Real-world Study Review: Kalydeco Improves Health Outcomes, Quality of Life – Kalydeco has been around long enough to do this sort of long-term assessment. It's reasonable to expect similar (or better) outcomes for Trikafta. 05/22/2021 - Round up of research from UK CF Conference – Conference topics indicate that UK researchers put an emphasis on approaches for individuals who do not benefit from CFTR modulators. 05/25/2021 - Medical Milestones, and the Next Generation of the CF Community – Here's an interesting take on collateral effects of improvements in CF care. 05/26/2021 - Implantable piezoelectric polymer improves controlled release of drugs – While the primary use noted in this article is cancer treatment (which is a risk for those with CF), it also mentions the potential for chronic pain control. 05/27/2021 - Balancing Advocacy and Self-care – This blogger discusses a skill we all need. 05/28/2021 –

May

CFFC Facebook Posts – May 2021 – Part 1

05/01/2021 - Researchers discover how Mycobacterium abscessus evolves – We have heard a lot about virus mutations over the last year. This study of bacterial mutations may hold a key to more effective treatments. 05/04/2021 - What Three Transplants Has Taught Me – Learning about the many aspects of CF the hard way. 05/05/2021 - My Health Is More Than Charts and Numbers – This story relates an important aspect of self-advocacy: knowing what your body is telling you. 05/06/2021 - Move over CRISPR, the Retrons are coming – A new approach that may provide a safer alternative to genetic therapy. 05/07/2021 - Marlene’s Story of Living 86 Years With CF – 86 years?!? That certainly sets a high bar for life expectations. 05/08/2021 - The European Commission approves extension of Kaftrio – This announcement from CF Ireland reminds us of two facts: (1) the approval process for new drugs varies from country to country, and (2) further research is essential since CFTR modulators do not benefit everyone with CF. 05/09/2021 - 41st Kit Taylor Memorial Lecture – Get an in depth review of the progress that has been made in CF care with a peek into the future. 05/10/2021 - Test, Treat Lung Infections Early, Analysis Suggests – Further evidence of the importance of early identification and treatment of infections. 05/11/2021 - Cystic Fibrosis at 30 – Many of us remember when the 30th birthday was an idealistic milestone in CF. While it is still significant, it has a different feel today, as Gunnar Esiason explains in this blog. 05/12/2021 - Navigating CF's Ups and Downs – This blogger has some suggestions for dealing with the ebbs and flows of life with CF. 05/13/2021 - How our research makes a difference: the Trust’s research impact report – CF research takes place all across the globe. This article, and the linked report, provides insight into the work being done in the UK. (The way ...

May

Clinical Trial Alerts – May 2021

Cystic Fibrosis Foundation issued the following clinical trial alerts in May. May 3, 2021 MAYFLOWERS: Study of pregnancy in women with cystic fibrosis Status: Enrolling Description: This observational study will evaluate the effects of CFTR modulators on women with CF during and after pregnancy. CFTR modulators are intended to help CFTR protein function closer to normal. Age: 16 Years and Older Mutation: No Mutation Requirement Fev1% Predicted: No FEV1 Limit Number of Visits: 9 Length of Participation: 35 months ClinicalTrials.gov link: https://clinicaltrials.gov/ct2/show/NCT04828382 Study to evaluate ARO-ENaC in adults with cystic fibrosis Status: Enrolling Description: This study will evaluate the safety and tolerability of ARO-ENaC, a drug intended to thin airway surface liquid. Multiple doses of the drug will be tested in adults with cystic fibrosis to find the optimal dose. Age: 18 Years to 55 Years Mutation: No Mutation Requirement Fev1% Predicted: 40 to 99% Number of Visits: 12 Length of Participation: 113 days ClinicalTrials.gov link: https://clinicaltrials.gov/ct2/show/NCT04375514