Author Archive

Jul

CFFC Facebook Posts – June 2022 – Part 2

06/16/2022 - How I Cope With Loneliness While Living With Chronic Illness – During the COVID shutdown, we all got a taste – a small taste – of the isolation that can be associated with chronic illness. 06/17/2022 - My Time in Grad School – Gunnar Esiason's reflection on the last three years describe the emotional evolution brought on by the hope that comes with the advances in CF treatments. 06/18/2022 - What Traveling Has Taught Me About CF – Visiting all 50 states may not be on your bucket list, but this blogger has some tips for maintaining your CF treatments while traveling. 06/19/2022 - Join Us as We Pursue Mental Wellness – August 10th – be there for CFFC's Education Day. This article describes our program and includes a link to register for the event. 06/20/2022 - Jillian and Ava’s Story – A familiar story of learning to live with CF – and of hope. 06/21/2022 - Better Diagnosis, Treatment Needed for Chronic Rhinosinusitis in CF Care – As treatments for lung disease improve, greater attention can be given to other health issues that impact life with CF. 06/22/2022 - Relearning Who I Am After Trikafta – Trikafta produces big changes in the physical aspects of CF which, in turn requires mental adjustments. 06/23/2022 - Survey Opportunity: Wellness of People with CF – Help guide CFF programs and policies by responding to this survey. 06/24/2022 - “It is my hope that in my career and lifetime I will be able to witness all people with CF being able to live a life unlimited”: CF researcher Alice Collins’ CF Week story – Observing a sibling's life with CF can be a powerful motivation to pursue a career to improve CF treatments. 06/25/2022 - Azithromycin Has Some Benefits for CF Infants, Study Shows – Although the primary goal of this study was not achieved, measurable benefits were obtain with the early intervention with azithromycin. 06/26/2022 -

Jun

Survey Opportunity: Wellness of People with CF

Cystic Fibrosis Foundation is seeking input on various aspects of life with CF. Here is their announcement: The Cystic Fibrosis (CF) Foundation is conducting a survey of people with cystic fibrosis to better understand their health-related needs and quality of life. We are interested in hearing from ALL people with CF and their families regardless of whether they have ever taken modulators. The goal of this survey is to learn from the CF community about their experiences of care and overall wellness, including emotional, social, and financial well-being. This information will be used to help guide the Foundation’s future efforts to drive research, improve high quality care, and identify resources needed by the community. The study team is interested in hearing from all adults with CF and the parents/caregivers of children with CF ages 0-17 years. If you would like to participate in this anonymous, 10-15 minute survey, please click on the button below by July 31st, 2022 11:59PM ET. Complete Survey Here Individuals who complete the survey will have the option to submit their e-mail address to be entered in a random drawing for a $25 Amazon gift card. Email addresses will never be sold or shared, or attached to survey responses. If you have any questions about this opportunity, please email communityvoice@cff.org. Thank you for your time and consideration. Best, Elizabeth Yu, PhD Physician Scientist  Training Program Director Cystic Fibrosis Foundation

Jun

Join Us as We Pursue Mental Wellness

Mental health as a component of CF care is getting increased attention. Yet it has not reached the same level of acceptance as daily physical regimens (meds, enzymes, mucus clearance) and periodic tune-ups. CFFC's Education Day program will address two of the hurdles to making emotional care part of the CF routine. Join us on Wednesday, August 10th for Pursuing Mental Wellness, a virtual conference. Here's the agenda for the evening: 6:15 PM – Login opens6:30 PM – Welcome6:40 PM – Panel discussion: “It's okay to ask for help”7:30 PM – Messages from our sponsors8:00 PM – Panel discussion: “How do I find help?”8:50 PM – Wrap up The stigma of mental health care may be a deterrent to seeking assistance. In the opening segment, our panel of individuals living with CF will discuss their experiences with recognizing the need for help and the benefits they have realized. The panel will be introduced on Education Day. The decision to get emotional support starts the search for the care that best fits your needs. Our panel offers a range of options. The panelists are: Amanda Healy, Social Media and Communications Director, Attain HealthGillian Mocek, MSW, Community Support Specialist, CF Peer Connect TeamStacey Smith, LMSW, Social Worker Mental Health Coordinator, Complex Care Center In addition to presentations by the panelists, each of the segments will include time for questions and comments from the audience. As noted above, Education Day will be a virtual conference delivered through Zoom Webinar. You must register to join the program but you can sign up at any time – right up to the start of the event. Click on the button below to register. Register for CFFC Education Day We're looking forward to an informative and inspirational discussion. We hope you will join us on August 10th. If you are unable to participate, watch for the announcement when the recording of the event is available.

Jun

CFFC Facebook Posts – June 2022 – Part 1

06/01/2022 - New antibiotics could prevent hearing loss in people with cystic fibrosis – Medications can have side effects so researchers are looking into treatments for treatments. 06/02/2022 - ‘Dust and Ashes’: Feeling Like a Burden Kept Me From Being Transparent – This blogger presents one of the many faces of mental health in CF. 06/03/2022 - Extracellular Matrix Changes May Point to New Biomarkers, Therapies – This research identifies physiological changes in lung tissue that reduce lung function, and suggests a path to therapies to restore lung function. 06/04/2022 - Becoming the Role Model I Wish I Had – This story is about learning to understand who you are and, then, respect yourself. It also reminds us that people living with CF deal with other challenges beyond CF. 06/06/2022 – Living with CF Golf Tournament – Come join us on September 10th. Have fun playing golf while supporting our programs. 06/07/2022- Audrey’s Story – Audrey's story has a lot of familiar pieces. The spirit she has developed through her experiences is also familiar. 06/08/2022 - PP-007 Resolves Lung Inflammation in CF Mouse Model – Prolonged inflammation promotes damage to lung tissue. This study offers an option manage inflammation without the negative side effects of anti-inflammatory drugs. 06/09/2022 – CFF Commitment to Equity, Racial Justice, Diversity, and Inclusion – CFF's pledge that no one will be left behind applies to more that specific mutations. This statement of commitment includes links to detailed discussions of components of their approach. 06/10/2022 - Understanding patient experiences is key to delivering meaningful CF care – This article reports on surveys conducted by UK's Cystic Fibrosis Trust but we could expect similar results in the US. This summary includes links to full reports on the pediatric and adult surveys. 06/11/2022 - Research Study Design for Pancreatic Enzyme Replacement Therapy – Here's an opportunity to add your views to the design of research into new enzyme replacement therapies. The survey closes June 23rd.

Jun

Clinical Trial Alerts – June 2022

Cystic Fibrosis Foundation issued the following clinical trial alerts on June 14th: Study of Trikafta® in people with CF ages 12 years and older who have partial function CFTR mutations Status: Enrolling Description: This study will look at the effectiveness of Trikafta®, a drug intended to help CFTR function closer to normal. This study is for people ages 12 and older who have two CFTR mutations not approved for Trikafta® and evidence of partial CFTR function. Partial function is defined as a sweat chloride level < 80 mmol/L and/or pancreatic sufficiency (no pancreatic enzyme supplement therapy). Age: 12 Years and Older Mutation: No Copies F508del Fev1% Predicted: No FEV1 Limit Number of Visits: 5 Length of Participation: 2 months ClinicalTrials.gov link: https://clinicaltrials.gov/ct2/show/NCT03506061 Study of Trikafta® in people with CF ages 12 years and older who have an N1303K CFTR mutation Status: Enrolling Description: This study will look at the effectiveness of Trikafta, a drug intended to help CFTR function closer to normal. This study is for people ages 12 and older who have two CFTR mutations not approved for Trikafta® and a least one of these mutations must be N1303K. Age: 12 Years and Older Mutation: No Copies F508del Fev1% Predicted: No FEV1 Limit Number of Visits: 5 Length of Participation: 86 days ClinicalTrials.gov link: https://clinicaltrials.gov/ct2/show/NCT03506061

Jun

Research Study Design for Pancreatic Enzyme Replacement Therapy

Cystic Fibrosis Foundation's Community Voice is seeking input on research parameters for new enzyme replacement therapies. The following is the text of their announcement, including links to an explanation of the survey and the survey itself. The deadline for participation is Thursday, June 23, 2022. In 2021, The CF Foundation partnered with Synspira Therapeutics, a company committed to CF research and advancing new therapies, to conduct a survey examining many aspects of Pancreatic Enzyme Replacement Therapy (PERT), commonly called “enzymes”, usage in the CF community and future clinical trial interest. Synspira is developing a new PERT that intends to simplify dosing, support long-term outcomes and is non-porcine based. The Synspira team would like to conduct another survey to hear from the CF community in the following areas: Gain insights into which settings for research visits are appealing to people with CF Gain additional insights to design clinical studies for new PERTs Better understand willingness to participate in research studies for PERTs Please click Synspira_Survey_Purpose to learn more about the purpose of this survey. Leaders of this project are interested in hearing from all adults with CF and their families who are currently taking pancreatic enzyme replacement therapies. If you would like to participate in this anonymous, 7-minute survey, please click on the button below by Thursday, June 23rd, 2022. Complete Survey If you have any questions regarding this opportunity, please contact communityvoice@cff.org. Thank you for your time and consideration, Danielle Gallotto, BSN, RN Manager, Clinical Operations Synspira Therapeutics, Inc.  

May

CFFC Facebook Posts – May 2022 – Part 2

05/16/2022 - Artificial cell membrane channels composed of DNA can be opened and locked with a key – This research was not specifically geared to CF but artificially created channels could be a solution for CF mutations that are not addressed by CFTR modulators. 05/18/2022 - Have You Met Cynthia Fibrosis? - As this story illustrates, it is important to embrace CF as a reality and then take charge of your life. 05/19/2022 - What To Do When “Most People Will Be Fine” And You Are Not “Most People” - An interesting view of the CF-meets-COVID world from a pharmacist who is a post-tranplant person living with CF. 05/202022 - In Pakistan, Life With CF Is Hard – CF Awareness Month is a good time to enhance our understanding that CF affects people of all nationalities and religions. 05/21/2022 - Celebrating International Clinical Trials Day – We may have missed the actual date for International Clinical Trials Day; however, we can still celebrate the benefits of clinical trials. 05/22/2022 - How My Exercise Capacity Improved After Going on Oxygen – Here's another story of taking control of the challenges thrown at you by CF. 05/23/2022 - In a First, Bacteriophages Eliminate Treatment-resistant Lung Infection – Although this article reports on a single case, the results are promising for the use of phage therapy in advanced lung disease. 05/24/2022 - Kansas City-area teen with cystic fibrosis calls breakthrough drug 'a miracle' – A local news human interest story provides a good overview of the success of Trikafta with recognition that this miracle is not available to everyone with CF. 05/26/2022 - Hot topics from UKCFC, the UK’s biggest CF research conference – A reminder that CF research goes on around the world – and that's a good thing. 05/27/2022 - How Having CF Shaped My Nursing Career – Success is the art of blending your personal life and your chosen career. 05/28/2022 - Cystic fibrosis: ...

May

CFFC Facebook Posts – May 2022 – Part 1

05/01/2022 - Cystic Fibrosis Around the World: The Kingdom of Jordan – Another flashback to Gunnar Esiason's series about CF experiences on other countries. This one has a nice tie in to the discussion in the Kit Taylor lecture regarding the additional challenges faced by the non-white CF community. 05/02/2022 - AbbVie Offers 2022-2023 Funding, Marking 30 Years of CF Scholarships – Here's the annual opportunity to get financial support for college. The article includes a link to the AbbVie scholarship site. 05/03/2022 - What I’ve Learned About Breastfeeding With CF – Improved treatments have led to more women with CF becoming mothers. This blogger offers advice on a significant issue in motherhood: breastfeeding. 05/04/2022 - Speak out and share your CF truth – May is CF Awareness Month. The UK's Cystic Fibrosis Trust has launched their “#CF Truths” campaign. The linked page will give you access to graphics and more that you can use to share facts about life with CF. Some are specific to the UK but most are generic. 05/05/2022 - CF-370 Reduces Hard-to-treat Bacteria in Rabbit Model – Initial results of this research are promising for defeating the defensive strategies of Pseudomonas aeruginosa. 05/06/2022 - CF Awareness Month – Two days ago, we shared resources from the UK to help you promote CF Awareness Month. Today's link connects you to similar resources produced in the US by the Cystic Fibrosis Foundation. 05/07/2022 - Quantum mechanics could explain why DNA can spontaneously mutate – Although this research does not have implications for CF treatment, you might find the investigation of the source of genetic mutations interesting. 05/08/2022 - “More than anything, we are never alone”: Beth’s story – With all the good news stories about Trikafta (Kaftrio in Europe), we can lose sight of the fact that not all of the stories are positive. 05/09/2022 - 31 Days of CF: My Tattoos Helped Me Cope With Having CF – Each individual needs to find their unique path to controlling their well being.

Apr

CFFC Facebook Posts – April 2022 – Part 2

04/16/2022 - What I Learned While Trying to Get Pregnant – The dream of parenthood is becoming more reality than dream in the CF world. This mom has some encouraging words. 04/18/2022 - Lung Clearance Index May Predict Lung Damage in Children – Earlier detection equals earlier intervention equals better long-term results. This approach not only suggests earlier detection but also employs a non-invasive technique. 04/19/2022 – Mark You Calendar for Education Day 2022 – We're looking forward to another informative Education Day when we present “Pursuing Mental Wellness” on August 10th. 04/20/2022 - 2022 Kit Taylor Memorial Lecture – This brief summary of this year's Kit Taylor Memorial Lecture includes a link to a recording of the presentation. 04/21/2022 – Community Grant Review of Tools for Remote CF Care Delivery – Here's an opportunity to get involved in the development of resources for your personal care. 04/22/2022 - “For CF research there are lots of interesting puzzles to solve”: Dr Lucy Allen, Director of Research – While this article refers to the process of setting research priorities in the UK, the exchange between a person living with CF and a lead researcher is relevant everywhere. 04/23/2022 - If Vertex Has Such a Commanding Hold on the CFTR Modulator Market, Why Are Other Drug Makers Joining the Race? - Once again, Gunnar Esiason applies the knowledge from his business degree to an analysis of the CF world; this time the drug marketplace. 04/24/2022- Common Environmental Fungus Can Worsen Lung Function in CF Children – CF lungs are fertile ground for several organisms that do not adversely affect non-CF lungs. This study points to the need for early detection of fungal colonization as well as bacteria. 04/25/2022 - The Best Reluctant Decision I Ever Made – This story demonstrates that the transplantation decision in not straightforward and full of conflicting emotions. 04/26/2022 - “I think if you can get the best produce, and cook it the best you can, it speaks for ...

Apr

Adapting to Post COVID Schools

School and CF have always been a challenging combination. The COVID-19 pandemic - and the recovery - added twists to that formula. The Cystic Fibrosis Foundation (CFF) has updated their advice to address the "new normal." In their announcement, CFF noted: Masking has been shown to effectively reduce the spread of illness, including COVID-19. But some schools and families may approach how to mask differently than you. If you or your child with cystic fibrosis need tips to help feel comfortable masking at school, explore our guide: COVID-19: Returning to School. Get the PDF version of the guide here: CFF Returning to School Guide The guide offers advice on a lot of topics beyond masking. It also includes links to a risk assessment tool and information in individualized education programs.