Author Archive

Apr

CFFC Facebook Posts – April 2021 – Part 1

04/01/2021 - Taking Trikafta Topped My Experience on Reality TV - Brianna Collichio is not the only person with a connection to Trikafta to get her chance on TV. 04/02/2021 - Supporting Your Adolescent's Mental Health During the Pandemic: A Conversation for Parents – Mental health is a long-standing issue in the CF community that has been exacerbated by the pandemic protocols. Cystic Fibrosis Foundation is offering help through this virtual conversation. [NOTE: Panel discussion was held April 7th.] 04/03/2021 - Unpopular Opinion: I Know What I Need, but the Healthcare System Doesn’t – CF is commonly thought of as a lung disease, but it is way more complex than that. When that complexity intersects with the healthcare system, you may experience the frustration expressed in this blog. 04/04/2021 - "A team effort" – Cicely's story of transition to adult care – As noted in this blog, transition is different for everyone. In this case, Cicely turned some tough time into an opportunity to get acquainted with her new care team. 04/05/2021 - Trikafta Found Safe, Effective for Children Ages 6–11 – With all the attention given to the expansion of COVID vaccine access, you may have missed the extension for the use of Trikafta. 04/06/2021 - Paleopharmaceuticals from Baltic amber might fight drug-resistant infections – The scientific method can distill modern medicines from long-standing folk medicine. 04/07/2021 - How I Avoid Making Different Meals for Each of Our Family Members – This blogger offers her suggestions for menu planning in a family with varied diets, including the needs for a child with CF. 04/08/2021 - OPTION 2 Trial Testing MS1819 for EPI Posts ‘Mixed’ Topline Results – As we have said before, it is as important to learn about unsuccessful trials as it is to hear about success. 04/09/2021 – Clinic Baggies – The Clinic Baggies distributed at the CF pediatric clinic are symbolic of CFFC's goal to bring a little sunshine to our local community. 04/10/2021 - Trial Testing Personalized Chest Physiotherapy System ...

Apr

Clinical Trial Alerts – April 2021

Cystic Fibrosis Foundation issued the following clinical trial alerts in April April 13, 2021 OPTION: Study of AzurRx MS1819 in people with cystic fibrosis (CF) and exocrine pancreatic insufficiency who are 18 years and older Status: Completed with results Description: This study evaluated the safety and effectiveness of the drug MS1819 as a pancreatic enzyme replacement therapy (PERT). MS1819 is a non-porcine (not pig-derived) lipase-only enzyme for people with CF who have exocrine pancreatic insufficiency (EPI). Age: 18 Years and Older Mutation: No Mutation Requirement Fev1% Predicted: 30% or greater Number of Visits: 10 Length of Participation: 11 weeks ClinicalTrial.gov link: https://clinicaltrials.gov/ct2/show/NCT03746483 April 14, 2021 HERO-2 Status: Enrolling Description: This study will collect everyday observations that individuals with CF, who are taking the triple-combination modulator, elexacaftor/tezacaftor/ivacaftor (Trikafta®), make in their daily lives over 12 months. Participants will use the Folia app to track their routine treatments, medication usage, and symptoms, and will answer validated patient-reported outcome questionnaires. Participants who are participating in the CF Patient Registry will have their Registry data linked to their Folia tracking data to assess the relationship between any medication changes and changes in lung function. This study will not provide or make any treatment recommendations, and there are no required study visits.  Age: 12 Years and Older Mutation: No Mutation Requirement Fev1% Predicted: No FEV1 Limit Number of Visits: 0 Length of Participation: 12 months ClinicalTrials.gov link: https://clinicaltrials.gov/ct2/show/NCT04798014

Mar

CFFC Facebook Posts – March 2021 – Part 2

03/16/2021 - A Walking Miracle! Brianna Collichio Defies All Odds - American Idol 2021 – This is probably old news to everyone in our community, but it can't be repeated too often. Brianna has come a long way from singing the National Anthem at CFFC's 3-on-3 basketball tournament; including a stop to sing the anthem at NY Jets stadium. You are an inspiration, Brianna! 03/17/2021 - Six Tips to Help You Incorporate Self-Care While Managing Your CF – This blogger makes an important distinction between care management and self-care. 03/18/2021 - New Gene-editing Tool Can Reverse Specific CF-related Mutations – A Nobel Prize went to a team of CRISPR pioneers. Research extending the application of that innovation continues to find fixes for genetic diseases like CF. 03/19/2021 - How I Found My Way Back to Regular Exercise - This blog has two themes. The main story line is the significance of exercise in CF care. The companion point is the importance of an encouragement partner. 03/20/2021 - CF Foundation Continues Free Access to Online Exercise Platform – Yesterday's post promoted exercise as part of CF treatment. This article discusses a means to enhance your exercise regimen. 03/22/2021 - How we're improving access to CF social workers – Although this article details what's happening in the UK, there are some important notes on the role of the social worker in the CF care team. 03/23/2021 - Computer-designed Enzyme May Help to Kill P. aeruginosa in Biofilms – Researchers have found another promising avenue to attack Pseudomonas. This study was focused on breaking down the bacteria's protective biofilm. 03/24/2021 - The (Kind of) End of a Long Road – Another step in Gunnar Esiason's journey through the COVID-19 maze. You might compare your thoughts on post-vaccine activities with Gunnar's. 03/25/2021 - How I Got My Son to See the Importance of Taking His CF Medications – Raising a child with CF has all the challenges of parenthood with a few extra thrown in, such as some important conversations.

Mar

CFFC Facebook Posts – March 2021 – Part 1

03/01/2021 - What Will the Return to Normal Be Like After the Pandemic? - This blogger deals with the question we all probably have. 03/02/2021 - Luke's story: balancing challenges of COVID-19 and finding perspective – Fortunately – and unfortunately – a life with CF teaches you to adapt to the circumstances you encounter. 03/03/2021 - Girls With CF Need Reproductive Counseling, Study Asserts – The range of specialties that comprise the CF care team needs to expand as new treatments change the expectations of life with CF. 03/04/2021 - How bacteria defeat drugs that fight cystic fibrosis – Understanding the origins of protective films may lead to the development of countermeasures that will improve the effectiveness of antibacterial treatments. 03/05/2021 - What Will the Return to Normal Be Like After the Pandemic? - This question is on everyone's mind. Compare this blogger's answer with yours. 03/06/2021 - A storm is coming! - Although this trial will take place in the UK, the results will be of interest to everyone using Trikafta. [NOTE: In Europe, Trikafta is marketed under the name Kaftrio.] 03/07/2021 - The right '5-a-day' mix is 2 fruit and 3 vegetable servings for longer life – Okay parents. Now, when you “instruct” your kids to eat their fruits and vegetables, you can follow up with “you'll live longer.” 03/08/2021 - How I Got My Life Back – If you wondered what happened to other hospital procedures during the pandemic, this bloggers story tells you that essential surgeries continued. 03/09/2021 - Help fight for the Adult CF Program in New York – You can add your voice to the call to reinstate NY's program to help people living with CF obtain health insurance. 03/10/2021 - P. aeruginosa Resistance May Be Measure of Ability to Hijack CF Mucus – Once again, basic science may lead to improved treatments for resistant bacteria. 03/11/2021 - Advice for New Parents of a Child With CF – ...

Mar

Help fight for the Adult CF Program in New York

Cystic Fibrosis Foundation has issued a call for support to add the Adult CF Assistance Program back into the upcoming State budget. Here is the text of their appeal. Last year, New York ended the Adult CF Assistance Program (or the “Over 21” program), a crucial source of health coverage for New Yorkers living with cystic fibrosis. Since the program’s elimination, some New Yorkers have faced difficult decisions about their health and finances, all while navigating the ongoing pandemic. We have a chance to fix this. The state legislature is making funding decisions for this year’s state budget and now is our opportunity to urge them to restore this vital program. Take Action Now The pandemic has set the stage for another contentious budget year, and lawmakers need to hear from constituents like you about the importance of supporting people with CF. Please send a message now to urge your representatives to restore the Adult CF Assistance Program in this year’s state budget. Thank you for all you do for people with CF, Elizabeth Holden Senior Manager, Policy & Advocacy   The linked page has a prepared message that will be sent to the legislators for your district. If you choose, you can edit the message to add a personal touch. NOTE: Name, address, phone number and email address are required for communications with State legislators.

Mar

CFFC Facebook Posts – February 2021 – Part 2

02/16/2021 - Getting started in a career in research – We missed this item on International Day of Women and Girls in Science but the topic is relevant every day. Although the story comes from the UK, the sentiments apply on this side of the pond. 02/17/2021 - Disaster and Emergency Preparedness Plan – Cystic Fibrosis Foundation offers guidance for generic natural disasters. The spate of severe weather make this relevant today. 02/18/2021 - Our Proposal Story! The One Year Anniversary of Our Engagement – The only connection to CF in this story is Gunnar Esiason, but who doesn't need a good love story at this tine of year. 02/19/2021 - Bronchitol, Inhalation Powder for Mucus Clearance, Arriving in US – Help for lung clearance may be on the way for those who are unable to use Trikafta. 02/20/2021 - Not Letting CF Guilt Hurt My Relationship – Guilt is part of the mental health challenge faced by people living with CF. 02/21/2021 - Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients – How do your observations match up with these survey results? [Note: The article includes a link to the survey report.] 02/22/2021 - Trikafta Brought Me Twins – Another long-term benefit of CFTR modulator medications. 02/23/2021 - Research Examines CF Patients’ Susceptibility to COVID-19 – This article describes the premise of new research to examine COVID-19 in CF cells. Although no results are reported, the discussion of the research methodology is fascinating – and promising for future research. 02/24/2021 - My Experience With My Husband’s Lung Transplant – The emotional stress of caring for someone living with CF is amplified with transplantation. 02/25/2021 - Your Questions About My COVID-19 Vaccine Experience Answered – As usual, Gunnar Esiason translates his experience into generalized recommendations. Note: His experience was in New Hampshire so some of the details may vary in New York or whatever state you're in. Two words, however, will apply universally: persistence and patience.

Feb

CFFC Facebook Posts – February 2021 – Part 1

02/01/2021 - My Experience in a COVID-19 Vaccine Trial – The experience of this blogger indicates that people living with CF don't need to fear the COVID-19 vaccine. 02/02/2021 - COVID-19 Vaccines Pose Little Risk to Rare Disease Patients, FDA, CDC Say – As a follow up to yesterday's post, this article presents the science behind the assertion that people living with CF face no greater risk with the COVID vaccine than the general population. 02/03/2021 - Camaraderie in the CF Community – The greatest comfort comes from those who truly and fully know what you're going through. 02/04/2021 - Workshop Opportunity: STRC mHealth Workshop – Mobile technology is one component of eMedicine. CFF is seeking volunteers to help set the direction for development of those technologies. This link will take you to a description of the workshop including an application to participate. [NOTE: Application closed 2/15/2021.] 02/05/2021 - When’s Our Turn? Waiting to Get the COVID-19 Vaccine – This blog expresses the frustration felt by some in our local CF community still waiting for COVID vaccination, but also notes the challenge of establishing priorities for the limited supply of vaccine. While some people living with CF have been vaccinated, that selection is often based on some criterion other than CF. 02/06/2021 - Emerging Bacteria Species Shows Antibiotic Resistance, Patient Transmission – COVID isn't the only new threat facing the CF community. 02/07/2021 - Opening Up About My CF – This is a story about that point in time when You stop letting CF control you and you take control of CF. 02/08/2021 - NY allowing residents with underlying health conditions to get COVID vaccine. Here's the list. - In case you missed this news, people living with CF are now eligible for COVID vaccine in NY. [Unfortunately, access to this link now requires a Democrat & Chronicle account.] 02/09/2021 - How do antidepressants trigger fear and anxiety? - Depression is an aspect of CF for many in the community. This study explored brain functions that increased fear ...

Feb

Clinical Trial Alerts – February 2021

Cystic Fibrosis Foundation issued the following clinical trial alerts in February. February 5, 2021 Phase 3 study of inhaled vancomycin in adults and children 6 years and older with cystic fibrosis Status: Completed with Results Description: This study evaluated the effectiveness of the inhaled drug vancomycin hydrochloride inhalation powder (AeroVanc) in adults and children 6 years and older with CF and positive cultures for methicillin-resistant Staphylococcus aureus (MRSA). Age: 6 Years to 21 Years Mutation: No Mutation Requirement Fev1% Predicted: 30 to 90% Number of Visits: 13 Length of Participation: 12 months ClincalTrials.gov link: https://www.clinicaltrials.gov/ct2/show/NCT03181932 February 8, 2021 STOP-PEDS Pilot: Study to evaluate treatment of pulmonary exacerbations in children 6-18 years old with CF Status: Enrolling Description: This study will evaluate children 6 to 18 years old with CF to determine the acceptability and feasibility of a larger trial comparing immediate antibiotics versus tailored therapy for pulmonary exacerbation treatment. Age: 6 Years to 18 Years Mutation: No Mutation Requirement Fev1% Predicted: 50% or greater Number of Visits: 3 Length of Participation: 18 months ClincalTrials.gov link: https://clinicaltrials.gov/ct2/show/NCT04608019

Feb

Workshop Opportunity: STRC mHealth Workshop

Cystic Fibrosis Foundation Community Voice has issued the following call for volunteers to participate in a workshop looking at potential mHealth (mobile technology to achieve improved health goals) products. Here is their announcement. Topic: STRC mHealth Workshop Opportunity: Workshop Attendance Respond by: Monday, February 15th at 11:59 p.m., ET   Although there are many effective treatments for CF, people living with the disease often struggle to balance their lives with managing their daily care. The Success with Therapies Research Consortium (STRC) is a network within the CF Foundation that facilitates the clinical study of interventions to improve day-to-day adherence and CF self-management to optimize health outcomes and quality of life. To continue towards the mission of the STRC, and in response to a community survey in which the community highlighted interest in app and web-based solutions (mHealth) to assist in managing their care, we will be hosting a two-day virtual workshop to help identify a mHealth product for a future STRC study. mHealth: mobile technology to achieve improved health goals We are looking to include 6-8 CF community members to participate in the meeting virtually. We would like to include people with CF, parents, spouses, those not on modulators, and those who are underrepresented in the CF community. The workshop will take place on Thursday, April 29th and on Thursday, May 13th, 2021. If you are not able to make the live workshop, an opportunity for offline participation will be provided. Participation in this workshop will include working with a multidisciplinary team including CF Foundation staff, clinicians, researchers, and other community members during the live workshop. "This is a great opportunity to use your voice to impact a tool that has the potential to help our community a great deal. CF adults and families are the stakeholders whose opinions make a huge difference, but we'll never impact change if we don't take our seat at the table and share freely. I hope you'll apply and offer your invaluable stakeholder perspective."  - Melanie Abdelnour, STRC Steering Committee Member   Click here to learn more about the expectations and goals of this workshop. To apply to participate in the mHealth Workshop, please click the button ...

Feb

CFFC Facebook Posts – January 2021 – Part 2

01/16/2021 - Phase 1/2 Trial to Test Phage Therapy for Chronic P. aeruginosa Infections – This clinical trial seeks to move phage therapy from theory to practice. 01/17/2021 - What I Didn’t Expect From Trikafta – This blog is a reminder that there are no perfect solutions to CF. 01/18/2021 - How a Blood Donor Saved My Life – This story promotes blood donors but there is s subplot about care givers who don't pay attention to their patient. 01/19/2021- Ushering Cystic Fibrosis Patients Into Adulthood – This article is over a year old but is still relevant. In addition to the core message, there is an interesting perspective on the variations in CF care around the world. 01/20/2021 - Emma's story: Getting the COVID-19 vaccine – Aside from the organizations involved, the experience of getting a dose of COVID vaccine in the UK is instructive for expectations here. 01/21/2021 - Bacteria in Irish Soil Seen to Block Those Tied to Chronic Lung Infections – This study not only identifies a new source for fighting lung infections but also points to the importance of understanding natural remedies. 01/22/2021 - Catya Kurban: I am Child Life Specialist with Cystic Fibrosis and Received a COVID-19 Vaccine – Another firsthand story from a person living with CF who has received her fist COVID vaccine dose. 01/23/2021 - Finding Your CF Community – We all need help in finding our way through life, but it is particularly true for parents of newly diagnosed children with CF. CFFC is prepared to help people make connections with someone with more experience with CF. If you're interested, contact us at info@cffamilyconnection.org. 01/24/2021 - Immune system mounts a lasting defense after recovery from COVID-19, researchers find - Okay, this isn't specifically about CF. However, this article offers news about a recurring question on COVID-19 immunity. 01/26/2021 - One Full Year Without a Viral Infection: Thank You, Social Distancing – Gunnar Esiason draws a connection that we may miss in ...