News

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.” 04/04/2020 - 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 letter from your CF psychologists – Some useful advice for these trying times. 04/13/2020 - Your Cystic Fibrosis Experience Will be Enormously Valuable in the Post-Pandemic World – Gunnar Esiason suggests the ...

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

03/17/2020 - 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. 03/21/2020 - 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 – This blog from Gunnar Esiason could have a subtitle of “the more things change, the more they stay the same.” 03/25/2020 - Virtual Connection Opportunities – This week will provide you with two opportunities to participate in virtual gatherings that deal with aspects of COVID-19 in the CF community. 03/26/2020 - URMC Pediatric Clinic Status - The staff of the URMC pediatric CF clinic have developed COVID-19 guidance for the CF community. 03/27/2020 -

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.

Mar

URMC Pediatric Clinic Status

As our hospitals deal with all the implications of the COVID-19 pandemic, questions arise about the continuity of regular services. The staff of the URMC pediatric CF clinic have developed guidance for the CF community. The letter presenting this guidance was distributed by email and MyChart, but it never hurts use all available channels. You can read the advisory here: COVID-19 patient letter

Mar

Virtual Connection Opportunities

As we deal with the evolving COVID-19 pandemic, the isolation typical experienced by people living with CF is heightened. Cystic Fibrosis Foundation has a developed virtual gathering to connect the CF community with each other - and with relevant information. Cystic Fibrosis Foundation's Community Voice announced a CF Community Happiness Hour. Here is their announcement: Join us for a virtual Community Happiness Hour on Friday, March 27! Everyone in the CF Community is invited to join us for a virtual CF Community Happiness Hour on Friday, March 27 from 7 - 8 p.m., ET, hosted by the CF Adult Advisory Council. Panel discussions and chat will focus on how we’re finding joy in the here and now, as well as tips and tricks for working from home, parenting, and self-care during these unprecedented times. To register, please click on the button below. Register Here We hope to see you there!   Sincerely, The CF Adult Advisory Council

Mar

CFFC Facebook Posts – March 2020 – Part 1

03/01/2020 - CFTR Amplifiers May Be Potent CF Mono or Combo Therapy, Study Says – Future CF treatments may include a new drug that helps the body produce more of the CFTR protein – either as treatment by itself or in combination with CFTR modulators. 03/02/2020 - Stepping Back as My Daughter Steps Forward – Parenting is tough, but guiding a child with CF into adulthood can be tougher. 03/03/2020 - Coronavirus (COVID-19) and Some of the Ethical Questions Facing the Cystic Fibrosis Community – In this blog post, Gunnar Esiason shows how he is trying to balance the fact-vs-fear atmosphere around the coronavirus outbreak. 03/04/2020 - Coronavirus Q&A – Since it is a major news story, here is more coronavirus information. This time from the UK, so you will have to translate some of the contact information. 03/05/2020 - We Need to Change Our Language When Discussing Mental Health – Tre Larosa takes the brave step of sharing her struggles with anxiety and depression to support her proposal to change the dialogue around this aspect of CF. 03/08/2020 - Plant-based relatives of cholesterol could give boost to gene therapy – An important step toward effective gene therapy with a dramatic increase in the delivery of the corrected RNA to the target cells. [And it appears to be independent of the specific mutation(s).] 03/10/2020 - What I Learned About My Trikafta Weight Gain – Two messages in this blog. The obvious one (from the title) is that Trikafta may have some unexpected side affects. The other is a reminder to discuss any and all concerns you have with your care team. 03/11/2020 - Faces of a Clinical Trial – This blogger discussed the balance between participating in a clinical trial (helping others as well as yourself) and ...

Mar

Clinical Trial Alerts – March 2020

Cystic Fibrosis Foundation issued the following clinical trial alerts in March. March 4, 2020 ABATE: Study to evaluate IV gallium in adults with cystic fibrosis who have nontuberculous mycobacteria (NTM) Status: Enrolling Description: This study is taking place at multiple care centers across the U.S. It will look at the safety and tolerability of IV gallium, a drug intended to treat infections in the lung. Age: 18 Years and Older Mutation: No Mutation Requirement Fev1% Predicted: 25% or greater Number of Visits: 8 Length of Participation: 20 weeks ClinicalTrial.gov link: https://clinicaltrials.gov/ct2/show/NCT04294043 March 6, 2020 Phase 2 study of PTI-428 drug in people with CF ages 18 and older who have two copies of the F508del CFTR mutation Status: Completed with results Description: This study evaluated the safety and tolerability of the drug PTI-428. This study was for people with CF ages 18 and older who have two copies of the F508del CFTR mutation and were already taking tezacaftor/ivacaftor (Symdeko®). A key goal of the study was to determine if PTI-428 could increase the amount of CFTR protein produced in people who were already taking tezacaftor/ivacaftor (Symdeko®). Age: 18 Years and Older Mutation: Two Copies F508del Fev1% Predicted: 40 to 90% Number of Visits: 10 Length of Participation: 74 days ClincalTrials.gov link: https://clinicaltrials.gov/ct2/show/NCT03591094 Phase 1b study of inhaled AZD5634 in adults with CF Status: Completed with results Description: This study evaluated the safety and tolerability of the inhaled drug AZD5634 in people with CF. It also evaluated the effect of AZD5634 on improving the ability to clear mucus from the lungs (lung mucociliary clearance - MCC). Age: 18 Years to 60 Years Mutation: No Mutation Requirement Fev1% Predicted: 40% or greater Number of Visits: 4

Mar

CF Foundation Statement on COVID-19 Preparedness

The following statement was released on March 11, 2020 by Dr. Michael Boyle, Cystic Fibrosis Foundation, President and CEO. We take our responsibility to the CF community seriously. For the past few weeks, the CF Foundation has been closely monitoring the spread of COVID-19 throughout the United States, following guidance from the CDC and local health authorities, and consulting with CF experts to ensure we have the right plans and resources in place to safeguard your health and well-being and that of all people with CF.Nothing is more important.In cities where there has been the highest incidence of community spread of COVID-19, the Foundation has postponed local CF Foundation events and asked staff to work from home. To minimize unnecessary risk, we have suspended work-related travel for all CF Foundation staff, as well as in-person meetings with external parties in Foundation offices, encouraging virtual meetings whenever possible.Out of an abundance of caution, we are now taking the extra measure of postponing or canceling all in-person CF Foundation events scheduled to occur between March 16 and April 12, regardless of location. With the COVID-19 situation evolving quickly, we believe we must act decisively in order to minimize risk for the CF community and do our part to slow the spread of this outbreak across local communities. We are monitoring this closely and will assess future events as the situation evolves, always putting health and safety first.At this time, based on the CDC’s guidance for people who are at higher risk, we also recommend that people with CF not attend any large gathering and stay home as much as possible, though we recognize that decision is up to each individual.We recognize that the facts about COVID-19 are still emerging, and that the uncertainty can be unsettling. We are committed to providing updates to you, your families, and our volunteers as new information is available. Please check cff.org frequently for the latest guidance for those at a higher risk for complications from COVID-19.The Foundation is prepared to take all necessary steps to help safeguard the health of the CF community as we continue to focus on our mission.We appreciate your continued support. Thank you for your patience and commitment as we respond to this evolving ...