Author Archive

May

CFFC Facebook Posts – May 2020 – Part 2

05/16/2020 - The best material for homemade face masks may be a combination of two fabrics – This article presents research on the effectiveness of different mask materials. 05/17/2020 - "Achieving balance": Sean's story – It's no surprise that CF life across the Atlantic isn't much different. 05/18/2020 - Anti-inflammatory benefits of Orkambi and Symkevi in cystic fibrosis are uncovered – The benefits of CFTR modulators appear to extend beyond improvement in clearing out the lungs. Presumably this study will be extended to Trikafta in time. 05/19/2020 - Gene Therapy, KB407, Seen to Restore CFTR Protein in Cell Studies – A promising step toward gene therapy. 05/20/2020 - Questions to Ask Yourself When Considering College With CF – Although schools and colleges shut down prematurely, it is still appropriate to consider further education. 05/21/2020 - Embrace Friendly Debate: Is Cystic Fibrosis a Condition or a Disease? - Gunnar Esiason contributes to CF Awareness Month by making us aware of the various terms attached to cystic fibrosis and offering his opinion on the best way to apply those terms. 05/22/2020 – CFFC Face Mask Offer – With a relaxing of our state's Pause in the Finger Lakes region (on the brink of the Memorial Day weekend), the urge to break cabin fever is strong. If (when?) you do, please stay safe; particularly, wear a face mask. CFFC still has an inventory of cloth face masks available to households that include someone living with CF. 05/23/2020 - Finding Comfort & Opportunity in Social Distancing – A mom with CF finds some positive aspects to the stay-at-home protocols. 05/24/2020 - How Trefoil Proteins Act to Thicken Mucus Detailed in Study – While this study adds to the complexity of conditions associated with CF, it also provides a new avenue for improving lung clearance. 05/25/2020 - How CF Steered Me Toward a Career in Music – Although the punchline to this blog [spoiler alert] is the new lease on life with Trikafta, it is also ...

May

Opportunities to Provide Input

Cystic Fibrosis Foundation is seeking input on two aspects of life with CF: liver disease and CF related diabetes. The text of the announcements, including links to the related surveys, are presented below. CF Liver Disease Clinical Care Guidelines the CF Foundation will be developing CF Liver Disease Guidelines for individuals with cystic fibrosis. If you have experience with liver, biliary, or gallbladder issues, there are two opportunities to contribute to the development of these new guidelines. 1. Inform the Scope of GuidelinesTo help shape these guidelines, we kindly request that you complete the anonymous, 10-minute survey. The survey asks about your experience with and practice patterns around liver, biliary, and gallbladder disease; you may choose not to answer any or all questions. The survey will be distributed to members of the CF care team, individuals with CF and their family members, and hepatologists. The survey will close on Tuesday, June 2nd, 2020. TAKE SURVEY 2. Apply to join the CF Liver Disease Guidelines CommitteeWe are looking for multiple community members who have CF liver, biliary, or gallbladder experience to join the Guidelines Committee. This committee will review current literature to develop recommendation statements for liver, biliary, and gallbladder care in individuals with CF.Click here to learn more about the expectations and goals of this group. To apply for a position on the CF Liver Disease Guidelines Committee, please click on the button below. This questionnaire will close on Tuesday, June 2nd, 2020. Leaders of the committee will review completed applications and select finalists based on the information provided. APPLY FOR COMMITTEE CF-Related Diabetes CF-related diabetes (CFRD) affects over 35% of adults with CF and is consistently ranked as a high-priority for research by the CF community. 1. Inform the discussion   Following the series of focus groups held with many Community Voice members, the research team is now conducting a survey in partnership with the CF Foundation to learn more about the community’s: Priorities for future endocrine research Needs regarding CFRD-related education Perspectives on CFRD devices and technologies To take the 15-minute anonymous survey, please click the button below by Thursday, June 4th at ...

May

CFFC Facebook Posts – May 2020 – Part 1

05/01/2020 - Types of CFTR Mutations – May is CF Awareness Month. So, we are going to share links to basic information. This information will not necessarily new to you, but it may information you want to share with acquaintances to bring them up to speed on life with CF. 05/02/2020 – Treatments and Therapies – Continuing the CF Awareness month theme, here is a handy one page summary of CF treatments and therapies prepared by CF Ireland. 05/03/2020 - CF-Related Diabetes – CF Awareness Month. When you mention CF, thoughts go to lungs and digestion. CF related diabetes is also common within the community. 05/04/2020 – Lung Transplantation - CF Awareness Month. With advances in techniques and medications, transplantation has become a more option for those with advanced lung disease. 05/05/2020 - The Sweat Test – CF Awareness Month. While all newborns are screened for CF, the sweat test is still the definitive means for diagnosing CF. This pamphlet from CF Ireland provides an outline of the sweat test. 05/06/2020 - The Counseling Connection – CF Awareness Month. Mental health is an aspect of CF that may not get adequate recognition. This view of the importance of mental health care is provided by a practitioner with CF who also seeks therapy. 05/07/2020 - Being Transgender and Non-Binary in a CF World – CF Awareness Month (in a unique way). The primary themes of this blog are self-avocacy and care team building; however, the more subtle message is that CF is a non-discriminating disease. 05/08/2020 - COVID-19 Data Dump Delivers Good News for Cystic Fibrosis Population – CF Awareness Month – Gunnar Esiason points out news that is unsuspectingly positive for the CF population. 05/09/2020 - Research blast on... inflammation – CF Awareness Month – This “fun” report from UK's Cystic Fibrosis Trust explains the balance necessary in managing inflammation. 05/10/2020 - Recommendations Issued About Managing Chronic Disease in Children – CF Awareness Month – Perhaps awareness can go in many ...

May

Clinical Trial Alerts – May 2020

The following clinical trial alerts were issued by Cystic Fibrosis Foundation in May 2020. May 4, 2020 A study to evaluate tezacaftor/ivacaftor in adults with cystic fibrosis and two copies of the F508del mutation Status: Completed with results Description: This study evaluated the safety, effectiveness, and tolerability of the drug tezacaftor/ivacaftor (Symdeko®). This study was for people with CF ages 12 and older with two copies of the F508del CFTR mutation who had been taken off lumacaftor/ivacaftor (Orkambi®) due to respiratory side effects. Age: 12 Years and Older Mutation: Two Copies F508del Fev1% Predicted: 25 to 90% Number of Visits: 5 Length of Participation: 84 days ClinicalTrials.gov link: https://clinicaltrials.gov/ct2/show/NCT03150719 AeroVanc for the treatment of MRSA in people with CF Status: Completed with results Description: This study evaluated the safety and effectiveness of AeroVanc in treating persistent MRSA lung infections in people with cystic fibrosis. Age: 12 Years and Older Mutation: No Mutation Requirement Fev1% Predicted: 30 to 100% Number of Visits: 9 Length of Participation: 16 weeks ClinicalTrials.gov link: https://clinicaltrials.gov/ct2/show/NCT01746095 May 13, 2020 SIMPLIFY: Study to evaluate stopping inhaled hypertonic saline or dornase alfa in people with CF who are taking the triple-combination modulator, elexacaftor/tezacaftor/ivacaftor Status: Enroling Description: This study will test the effects and safety of stopping inhaled hypertonic saline or dornase alfa (Pulmozyme®) in teens and adults with CF who are also taking the triple-combination modulator, elexacaftor/tezacaftor/ivacaftor (Trikafta®). Trikafta® is intended to help CFTR function closer to normal, resulting in better clearance of mucus from the lungs. Inhaled hypertonic saline and dornase alfa are intended to thin airway surface liquid and improve clearance of mucus from the lungs. They are considered to be relatively burdensome therapies, so this study will look at the impact of stopping them in people who are also taking Trikafta®. Age: ...

Apr

CFFC Facebook Posts – April 2020 – Part 2

04/16/2020 - How I Fight Feelings of Isolation – Once again, an individual living with CF is using her experience to teach the rest of us how to cope with the “stay at home” atmosphere we are now living in. 04/17/2020 – CFFC Face Mask Offer - We are pleased to announce a timely offer of fabric face masks to members of the Rochester/Finger Lakes CF community. Clink the link below to learn more. 04/18/2020 - COVID 19 DEFENSE for Cystic Fibrosis Patients, or Anyone With Compromised Immunity – CFFC past president, Kori Tolbert Doherty, provides information on a simple step you can take in improve your protection against COVID-19. Her introduction says: “A prompt from my Continuum colleague and Buteyko practitioner Robert Litman , encouraged me into some more research around two simple things we can do to support ourselves with potential COVID 19 exposure.(So this means all of us given the spread and inability to tell the extent of who is carrying.) Nasal breathing and humming. I created this video to share this info with our CF Community, anyone that is at higher risk from exposure to this virus, and well, just anyone in general because when it cones down to it, it’s just good info for all ?. 04/19/2020 - Protein Called TAS2R38 Linked to Respiratory Tract Complications in CF – This study provides further explanation for the differences in CF symptoms. 04/20/2020- Revealing the secrets of bugs by tracking their genetics – The kind of work that has been done on CF infections is being used to solve the COVID-19 riddle. 04/21/2020 - How Living in Portugal Led to a Late Diagnosis – This blog post reminds us that CF care can vary greatly in different parts of the world (or different parts of this country). 04/22/2020 – CF Roundatable – Spring 2020 – This issue offers a mix of news on CF weight issues and COVID. As usual, good reading. 04/23/2020 - Faces of a Clinical Trial – Michael Hamilton – ...

Apr

Cystic Fibrosis Foundation is sponsoring a series of webinars regarding your legal rights in relation to the COVID-19 pandemic. The webinars will be lead by Beth Sufian, J.D., Director of the CF Legal Information Hotline. The programs will be offered on three consecutive Saturdays: April 25th, May 2nd and May 9th. The webinars are scheduled to start at 1:00 PM EDT. You will learn about: [bulletlist] Laws That Provide Paid or Unpaid Leave Obtaining Unemployment Benefits When Social Security is an Option Stimulus Payment Update Options for Health Insurance [/bulletlist] To participate, join the ZOOM event at:  https://zoom.us/j/760446776 Once you are connected to ZOOM, enter Webinar ID: 760 446 776 when prompted. If you do not already have the ZOOM client on your computer or phone, you will be prompted to install it when you access the link. If you do not have video access, you can join by phone. In New York, call 929-205-6099. Other numbers are available for additional cities across the country.

Apr

CFFC Facebook Posts – April 2020 – Part 1

04/01/2020 - An Evening with Gunnar and Darcy Postponed – Unfortunately, we are postponing our June 4th education event. Better safe than sorry. 04/02/2020 - A Doctor’s Perspective on CF Care – This “conversation between a person living with CF and the director of an adult CF clinic produces many important observations. One that stands out: the most helpful element in building a rapport with patients is “[s]pending time with them.” 04/03/2020 - Fighting CF with Family and Friends – This blogger suggests that the current conditions may heighten emotions felt regularly felt by people living with CF and others with chronic disease. 04/04/2020 - Vertex Assures Supply of CF Therapies, But COVID-19 Likely to Affect Trials – Not really a big surprise, but at least the currently approved drugs will likely be available. 04/05/2020 - Michelle’s story: cancelled plans, isolation and the kindness of others – Although this story comes from across the ocean, it will sound pretty similar. 04/06/2020 - Patient Privacy and the Pandemic: Where Do We Draw the Line? - Gunnar Esiason engages in an internal debate which gives us food for thought about applying normal standards in times of crisis. 04/07/2020 - Exceeding My Fitness Goals With Trikafta – Time for a “good news” link? Sure. 04/08/2020 - Maintaining Good Nutrition for Individuals with Cystic Fibrosis during COVID-19 - This link will open a PDF entitled "Maintaining Good Nutrition for Individuals with Cystic Fibrosis during COVID-19." The document was prepared by Sydney Children's Hospital, so there a few bullets that are specific to Australia. 04/09/2020 - Emotional Wellness & COVID-19 Webinar – [event is over] 04/10/2020- NORD’s Advice on COVID-19: You’re Stronger Than You Think – You ARE strong. This article reinforce the things that will help you get through the current crisis. 04/11/2020 - Facing the Monster: My COVID-19 Experience – Time for another good news story. “Practicing” with CF helped this woman beat COVID-19. 04/12/2020 - A ...

Apr

Announcing CFFC Face Mask Offer

We are pleased to announce a timely offer of fabric face masks to members of the Rochester/Finger Lakes CF community. This offer is possible through the efforts of a couple of volunteers with sewing skills. For more details, visit the new CFFC Face Mask Offer page.

Apr

CFFC Facebook Posts – March 2020 – Part 2

03/16/2020 - Q&A: COVID-19 and a quarantined CF patient in Italy – Although this blog presents the perspective of someone in northern Italy, the observations seem relevant for the planning – and education – that needs to take place here. 03/17/2020 - It is disappointing (if not scary) to find empty store shelves when you're looking for essential supplies. CFFC would like to help in a small (very small) way. We have six 8 ounce bottles of hand sanitizer that we can give to a person/family in need to bide them over until stores are restocked. If you have an immediate need for hand sanitizer, send a request to either:info@cffamilyconnection.org, ortuneup_tins@cffamilyconnection.org We will fill any requests received on a first-come-first-served basis with a limit of one bottle per request. 03/18/2020 - How Can We Support Health Systems Through the COVID-19 Crisis? Telehealth for Starters – Gunnar Esiason offers an interesting perspective, and some reasonable suggestions, on CF care during the COVID-19 pandemic. 03/19/2020 - CF Foundation Announces up to $5M Award to Support First-Ever Controlled Clinical Study of Phage Therapy in Cystic Fibrosis – An important step in the search for new weapons against resistant bacteria. 03/20/2020 - My Experience As One of the Only CF Patients Battling Covid-19 – An interview with a person living in the UK with CF who tested positive for COVID-19. The outcome is better than what you might expect. 03/21/2020 - My Unconventional Airway Clearance Routine – This blog not only promotes a different approach to airway clearance but notes the adjustments required with the introduction of Trikafta. 03/22/2020 - New CRISPR Tool Fixes CFTR Mutations in CF Patients’ Stem Cells, Study Finds – An important advance in the effectiveness of CFTR gene editing. 03/23/2020 - ResearchCon 2020 – Registration is now open for ResearchCon 2020. The virtual event will open with a discussion of COVID-19 and CF. Full agenda and a link to registration is available in the announcement. 03/24/2020 - Reverting to My Pre-Trikafta Norms Feels… Weird – ...

Mar

An Evening with Gunnar and Darcy Postponed

It will probably come as no surprise that CFFC has decided to postpone our Evening with Gunnar and Darcy that had been scheduled for June 4th. The restrictions on social gatherings have been widely extended through April 30th; however, there is a great deal of uncertainty about the progress of the COVID-19 pandemic. We feel it is prudent to focus our efforts on a revised date rather than place our hopes on an early end to the spread of the virus. Our decision is also consistent with the action taken by the Cystic Fibrosis Foundation to suspend in-person events. We remain excited about the program we designed with Gunnar and Darcy. We are also committed to our mission to provide relevant information. Therefore, we have opened a conversation to reschedule this year's event. Stay tuned for updates. Stay safe.