Author Archive

Aug

CFFC Facebook Posts – August 2020 – Part 1

08/01/2020 - With School Reopening, How Do I Know I Can Trust My Classmates? - Gunnar Esiason shares his thoughts on the prospects of returning to school (including an extrapolation to elementary and high school). It's likely that his thoughts are close to yours. 08/02/2020 - 'Drawn-on-skin' electronics offer breakthrough in wearable monitors – Another research report that is not directly related to CF; however, the advances in remote collection of health data is has great potential for individuals who live far from their care providers or need to avoid contact with other patients. 08/03/2020 - The Grief of Living With CF Needs to Be Felt – This blogger explains how her career in social work brought deeper understanding of the role isolation plays in CF mental health. 08/04/2020 - Thread-based Wearable Device May Help Diagnose, Monitor CF and Other Conditions – This research points to another option for non-invasive collection of health data (see August 2nd post), This one is more directly associated with CF. 08/05/2020 - Patient and Family Participation in Clinical Guidelines Development: The Cystic Fibrosis Foundation Experience – Cystic Fibrosis Foundation has received recognition for its approach to community inclusion in the development of care guidelines. 08/06/2020 - Access to medicines starts with clinical trials – This article from UK's Cystic Fibrosis Trust provides a good overview of the progression of CFTR modulator approvals, including a pitch for participation in clinical trials. 08/07/2020 - Choosing My Health Over My Livelihood – The pandemic creates a lot of tough choices. 08/09/2020 - Diagnosis Privilege Can Be a Form of Discrimination – A reminder of how lucky some of us are even as we battle the challenges of CF. 08/10/2020- One Month to 2020 Living with CF Golf Tournament – It's getting close. Time to sign up! 08/11/2020 - Nutrition leaflets – Cystic Fibrosis Trust (UK's CF Foundation) produced a series of 20 leaflets that provide information on a wide array of gastrointestinal issues ranging from “nutrition and pregnancy” to “post lung-transplant-nutrition.” 08/12/2020 - Mental Health During COVID-19 – The mental health concerns associated with CF can be amplified by the pressures added by ...

Aug

Survey Opportunity: Your Health Information

Cystic Fibrosis Foundation is gather your views on health data. The survey also includes an opportunity to volunteer for a working group on the topic. Here is the announcement from CFF Community Voice: The CF Foundation’s recent strategic plan highlighted the importance of high quality data and evidence to ensure that people with CF get the best possible health care.  As part of the work on this area of focus, we are deploying this survey to learn about:  How your health data is shared with you in clinic and your preferences around data sharing   Current practices for tracking your health at home and your willingness to share that data How you learn about CF and CF research and areas for improvement  Please consider taking this 4-6 minute survey by clicking the button below. Survey takers will also have the opportunity to apply for the Data Use & Evidence Generation Working Group which is actively involved in addressing this component of the strategic plan. The survey will close on Thursday, August 27th.   Take the Survey   If you have questions about this opportunity, please emailcommunityvoice@cff.org. Thank you for your time and consideration. Best,Aliza FinkSenior Director of Real World ResearchCystic Fibrosis Foundation

Aug

One Month to 2020 Living with CF Golf Tournament

We're looking forward to the 2020 edition of the CFFC Living with Golf Tournament. It's a little more than a month away - Saturday, September 12th. With all of the programs that have been postponed due to the COVID-19 protocols, we believe the tournament offers the safe exception to the events that support the CF community. The standards for golf include wearing masks where golfers gather and maintaining safe distances while golfing. We will also take precautions with our food services (pre-packaged snacks at check-in, boxed lunches after the game). You can get all of the tournament details in the CFFC Golf Brochure_2020. The brochure also includes an entry form. We recognize that our community is being appropriately cautious. If you want to support CFFC but are uncomfortable with group activities, we will gladly accept your donations in lieu of participation.

Aug

CFFC Facebook Posts – July 2020 – Part 2

07/16/2020 - Living with CF Golf Tournament 2020 – Mark your calendars, and keep your fingers crossed, for the 2020 edition of CFFC's golf tournament. 07/17/2020 - NIH Grant Supports Computer Modeling of Bacteria’s Behavior in Mucus – Once again investment in basic science could pave the way to more effective treatments. 07/18/2020 - I’m Healthy With Trikafta but Stuck Inside Because of COVID-19 – We've shared similar posts about people with CF interacting with the COVID world, but additional views can't hurt. 07/19/2020- Number of Adults With CF Likely to Grow by 28% Over Decade, UK Study Says – This analysis utilizes statistical methods to confirm what we know. Hopefully, this “official” analysis will prompt planning for treatment plans appropriate to an aging CF population. 07/20/2020 - Prioritizing Mental Health at a Young Age – This blogger explains why it's never to early to address the mental health aspects of CF. 07/22/2020 - New Technology Offers Potential for Faster, More Accurate CF Diagnosis – You would probably miss PFTs (?), but this technology would improve the assessment of lung function and help target physical therapy to open areas blocked by mucus. 07/23/2020 - Ineligibility/Unable to Benefit from Approved CFTR Modulator Therapies – This post announces an effort by CFF to ensure “no one is left behind.” 07/24/2020 - Virtual Event on School Reopening – Get some advice from CF experts on the pros and cons of returning to school. [This event has passed.] 07/25/2020 - Urine Marker Could Help in Screening for CF Lung Infections, Study Finds – Collection of sputum cultures can be unpleasant; especially if the test is likely to be negative. This study suggests that a simpler test may be appropriate for annual screening. 07/26/2020 - I Posted About Wearing a Mask on Facebook, The Result Was a Disaster – Here is (another) realistic view from Gunnar Esiason on the masking and social distancing required to survive (and defeat) the COVID-19 pandemic. 07/27/2020 ...

Jul

CFFC Annual Report 2020

CFFC completed another fiscal year on June 30, 2020. The financial results of that year are presented in CFFC Financial Statement 06302020. The cumulative revenues and expenses since CFFC was established in 1993 are shown in the charts on our Finances page. The statements show some significant changes from the prior year. With the cessation of activities due to the COVID-19 pandemic, the Education Day event scheduled for June 4th was postponed; consequently, there was a significant drop in our "Information Events" expenses with a corresponding decrease in "Program Sponsors" revenue. Patient benefits consisted primarily of our Hospital Help Packets (parking passes and food stipends) and Sunshine Clinic Baggies (parking passes and nutrition bars). Since there was a purchase of parking passes for the Strong garage at the end of 2018-19 year, there was no need to purchase additional passes in 2019-20. The reaction to COVID-19 also reduced the number of hospitalizations and clinic operations which lowered the demand for parking passes. After a break in 2018, the Living with CF Golf Tournament returned in September 2019 which accounts for the increase in fund raising income. One new program is not reflected in the financial statements. In response to our offer to provide face masks to CF households, we distributed 42 masks to 10 families. The masks were contributed by volunteer sowers. As always, we appreciate the support from our donors and sponsors which allows the continuation of our core programs.

Jul

The mental health aspects of CF do not get the same public exposure as the advances in medical treatments. Cystic Fibrosis Foundation is looking to prioritize research into mental health issues and is seeking public input. Here is the announcement from Community Voice of a survey on this topic: The CF Foundation's Clinical Trials team is collaborating with the Mental Health Advisory Committee to develop research priorities in mental health for people with CF and their caregivers. In preparation for two workshops dedicated to developing the key research priorities, this group is deploying two sister surveys to gain the perspectives of all key stakeholders: one geared towards people with CF and their caregivers and another for care providers, including CF Foundation staff. The goal of these surveys is to begin the framework for developing a mental health research priorities document to be included in the Foundation’s Key Priorities page as a resource to researchers and to guide in funding decisions based on priorities identified by the entire CF community.   If you are interested in participating in this opportunity, please click on the button below to take the 10 minute, anonymous survey by Monday, August 17th at 11:59 p.m., ET.   Take Survey   Thank you for your time and consideration. If you have any questions, please contact communityvoice@cff.org.   Best, Dara RivaClinical Research Awards DirectorClinical Trials TeamCystic Fibrosis Foundation   Paula LomasSenior Clinical Communications DirectorMental Health Advisory CommitteeCystic Fibrosis Foundation 

Jul

Cystic Fibrosis Foundation is seeking to form an ad hoc group of individuals who are unable to take CFTR modulators. Here is the announcement from Community Voice: To support the Foundation’s efforts that focus on those who are ineligible for or unable to benefit from approved (CFTR) modulator therapies, including ivacaftor (Kalydeco®), lumacaftor/ivacaftor (Orkambi®), tezacaftor/ivacaftor (Symdeko®), and elexacaftor/tezacaftor/ivacaftor (Trikafta™), the Community Voice team is forming an ad-hoc group to better understand the needs and experiences of these individuals and ensure representation of this perspective in all our work. As a part of this group, members will have the opportunity to share their insights and participate in various projects surrounding this topic. We are looking for people with CF, parents of children with CF, and partners of people with CF who: Have been diagnosed with nonsense or rare mutations and have not yet been approved to take a CFTR modulator therapy Are not approved/taking CFTR modulators for any other reason If you would like to opt into this group, please fill out the short interest survey by clicking on the button below. Also, It is important to hear from everyone who does not currently benefit from these therapies. Please feel free to share this opportunity with your social networks! Take the Interest Survey Thank you for your time and consideration. If you have any questions, please contact communityvoice@cff.org.

Jul

CFFC Facebook Posts – July 2020 – Part 1

07/01/2020 - My Self Quarantine is Coming to an End – As we begin to experiment with rejoining the outside world, Gunnar Esiason remoinds us that common sense precautions are not hard to do. 07/02/2020 - Humor Is the Best Medicine for My CF – An interesting outlook on – and survival technique for – life with CF. 07/03/2020 - Biofilm ‘Channels’ May Offer Better Way of Treating CF Bacterial Infections – Once again, basic science uncovers details about bacterial structure that may produce new approaches to infections. 07/04/2020 - Brianna Collichio sings anthem at a NFL game- N.Y. Jets - A throw back, but what could be more appropriate for the 4th of July than to listen to Brianna belt out the National Anthem from her CF lungs. 07/05/2020 - CF Champions: Charlotte Giroux – CF champions exist all around the world. Here's one story from our Canadian neighbors. 07/06/2020 - What to Look for in a Relationship When You Have CF – Emotional issues in CF can be as challenging as the medical issues. This blogger shares her thoughts on the foundations for effective relationships. 07/07/2020 - NuvoAir Home Monitoring System Bolsters Telemed Use in CF, Survey Finds – While the pandemic has raised the general awareness of infection risk, the CF community has always been aware of the risks associated with clinic visits. This preliminary study indicates that critical data can be added to virtual clinic visits. 07/08/2020 - Multiple Input Opportunities Relating to COVID-19 – The CF Foundation is seeking observations on various aspects of the COVID-19 pandemic. 07/09/2020 - How Being Furloughed Taught Me to Slow Down – Some times it takes a dramatic event to get us to reexamine how we should manage our life. 07/10/2020 - Orkambi Benefits CF Patients Across Levels of Lung Health, Study Finds – Researchers in France expanded the range of patients using Orkambi beyond the lung function parameters used in the drugs clinical trials. They found benefits in addition ...

Jul

Multiple Input Opportunities Relating to COVID-19

The CF Foundation is seeking input from the CF community on three areas of evolving care relating to the COVID-19 pandemic plus interest in future projects. The announcement from Community Voice follows. The CF Foundation is recruiting for multiple projects to better understand the impacts of COVID-19 on the cystic fibrosis community. Please see below to learn about some of these opportunities and fill out the brief interest survey by Friday, July 17th to get involved. Document Review Opportunity: Risk Assessment Tool As the country reopens, the Foundation's Communications Team is looking to get feedback via email on a potential risk assessment tool that will be used to help guide discussions between people with CF and their care teams on which activities they can return to based on their own risk tolerance and circumstances. Feedback gathered will be used to help determine whether this tool would be useful and how it can be improved. Interview/Focus Group Opportunity: Risk Perception on Reopenings The Communications Team is also hosting a series of focus groups and interviews to understand the CF community's perceptions surrounding risk tolerance, priorities, and fears surrounding the country reopening. The insights gathered will help identify challenges the community faces, ideas on how to address them, and inform a future survey surrounding this topic. Interview Opportunity: Telehealth Services The Foundation's Policy Team is hosting interviews to learn about community members' experiences with telehealth during COVID-19, including from those who have not had telehealth experiences. The goal of these interviews is identify the benefits and barriers of telehealth for people with CF and their families and will help inform a future survey surrounding this topic. Future COVID-19 Related Opportunities There may be future opportunities to provide feedback on projects related to COVID-19. If you are interested in being contacted for these projects, please fill out the interest survey below. Take the Interest Survey If you have questions regarding these opportunities, please email communityvoice@cff.org. 

Jul

CFFC Facebook Posts – June 2020 – Part 2

06/16/2020 - Mucus breakthrough could help patients breathe easy - Basic science is the first step on the path to new treatments. 06/17/2020 - My Experience With Telehealth – This blogger's telehealth experience highlighted two characteristics that are always important: self-advocacy and awareness to what your body is telling you. 06/18/2020 - Second-hand Smoke Affects Metabolism in Infants and Children with CF, Study Finds – This study emphasizes the importance of keeping children with CF out of environments with cigarette smoke. 06/19/2020 - Mask Wearing: The Dumbest Binary Political Issue Out There – Science,m not politics, define the benefits that make masks worth the “inconvenience.” 06/20/2020 - Faces of a Clinical Trial – Jenna Coombs – Another entry in Cystic Fibrosis Canada's ongoing series of personal experiences with clinical trials. 06/21/2020 - CFRD is the Cloud in My Trikafta Silver Lining – Perfect solutions are hard to come by. 06/22/2020 - How I Regained My Independence During the Pandemic – Despite a lifetime being alert to possible infection, coming out of the height of the pandemic adds heightened awareness. 06/23/2020 - Living with CF: A Partner’s Perspective – This story from the partner of a person living with CF shows the progression of understanding and adaptation. 06/24/2020 - What I’ve Learned From 11 CF Care Centers in 21 Years – You can learn many things through comparisons. 06/25/2020 - Face masks critical in preventing spread of COVID-19 – Another study that proves what you already know; however, this information needs to get out to the broader population – and extended to other situations like flu season, medical offices, etc. 06/26/2020 - Survey Opportunity - CF Care During COVID-19 – A team at the University of Arizona has produced a survey to gather information on the impact that COVID-19 has had on CF medications and telehealth. 06/27/2020 - Finding Fate in the Fallout – A story of recovery ...