Author Archive

Jan

CFFC Facebook Posts – January 2022 – Part 1

01/01/2022 - How Chronic Illness Affected My Education – This blogger has some thoughts on extending her CF school experience to deal with the impact COVID has had on education. 01/03/2022 = Being Diagnosed With ADHD Made Life With CF Easier – Another reminder that CF does not exempt you from other disorders. 01/04/2022 - Top 10 Cystic Fibrosis Stories of 2021 – The annual practice of looking back for the biggest stories of the past year. 01/06/2022 - Cystic Fibrosis Foundation ResearchCon 2022 Prioritization Survey – Here's an opportunity to influence the agenda for CFF's ResearchCon. [NOTE: Survey expired 01/12/2022] 01/07/2022 - Iron Buildup May Lead to Death of CF Airway Cells, Study Suggests – This article is fairly dense but it points to another chemical balance issue associated with CF. 01/08/2022 - How I Learned to Let Go as a Parent of a Child With CF – “Letting go” is a very difficult transition. Like everything else, CF complicates that transition. 01/10/2022 - Using the Cystic Fibrosis Program for Individualized Therapy (CFIT) to enable therapy discovery for those people with rare CF-causing mutations – Cystic Fibrosis Canada supports a program designed specifically to look for therapies that address rare CF mutations. 01/11/2022 - CFF’s Rapid Fire Deals Prove There is Still a Market for New CF Drugs – Gunnar Esiason's view of the Cystic Fibrosis Foundation's investment strategy is a good companion view to the news from Canada that was shared here yesterday. 01/12/2022 - "My hope for the future is to watch Katy live a long and healthy life": Stacey reacts to the Kaftrio news – Many new futures are envisioned as the use of Trikafta (Kaftrio in Europe) spreads around the world. This article also includes the pledge in the UK to continue to seek treatments for those not helped by the current CFTR modulators. 01/13/2022 - Educating Others About CF to Protect Our Daughter – Maintaining a healthy environment requires cooperation from the family and friends ...

Jan

Clinical Trial Alerts – January 2022

Cystic Fibrosis Foundation issued the following clinical trial alerts in January: January 10, 2022 BALANCE-CF 1: Study of BI 1265162, a mucus clearance drug, in teens and adults with CF Status: Completed with results Description: This study evaluated the safety and effectiveness of BI 1265162, a drug intended to improve the clearance of mucus from the lungs. Age: 12 Years and Older Mutation: No Mutation Requirement Fev1% Predicted: 40 to 90% Number of Visits: 5 Length of Participation: 7 weeks ClinicalTrials.gov link: https://clinicaltrials.gov/ct2/show/NCT04059094 Phase 2 study of riociguat in adults with CF Status: Completed with results Description: This study evaluated the safety, tolerability, and effectiveness of the oral drug riociguat in adults with CF who have two copies of the F508del mutation and were not receiving CFTR modulator therapy. Age: 18 Years and Older Mutation: Two Copies F508del Fev1% Predicted: 60 to 90% Number of Visits: 9 Length of Participation: 28 days ClinicalTrials.gov link: https://www.clinicaltrials.gov/ct2/show/NCT02170025

Jan

Cystic Fibrosis Foundation is seeking input to develop the agenda for ResearchCon 2022. Here is their request: The CF Foundation's Community Conferences team is conducting a survey for the 4th annual ResearchCon, a virtual event for the CF community where participants will learn about and discuss research topics with experts in the field. ResearchCon 2022 will take place on April 7 and 9. To help prioritize what should be included in the event's agenda, the ResearchCon planning group would like your input on what topics in CF science and research should be part of the event program. To participate in this 3-minute survey, please click on the button below by Wednesday, January 12th. You will be asked to select up to 10 topics and rank them by priority, with 1 being the topic of highest priority to you.  Complete the Survey As you take this survey, please reflect on your own interest, as well as the needs of the whole CF community in getting up to speed on current CF research. If you have any questions about this event or opportunity, please contact communityconferences@cff.org. We appreciate your perspective and thank you in advance for taking the time to complete this survey!  Best,Shelby Luebbert & Cindy GeorgeResearchCon 2022 Co-Chairs

Jan

CFFC Facebook Posts – December 2021 – Part 2

12/16/2021 - Looking back over an extraordinary year: the 2020 CF Registry Report – A retrospective from the data gathered in the United Kingdom. 12/17/2021 - Nasal Epithelial Cells Grown in Culture Could Be Useful in CF Studies – This study opens another avenue to research CF treatments in the lab. 12/18/2021 - This Year, I’m Ready to Risk Being Excited About the Holidays – Hopefully, we can all find a way – a safe way – to get excited about the holiday season. 12/19/2021 - Cystic Fibrosis Around the World: Finland – Another throwback, but it is interesting to see how CF is managed in other countries. Note, this article was written before acceptance of Trikafta across the EU. 12/20/2021 - Deciding When to Disclose CF at College – Another view on how to share your CF story with new friends. 12/21/2021 - Community Stories, Tamy Mailly – A story of CF in a family where the initial diagnosis wasn't believed because of their race. 12/22/2021 - Women with CF Need Counseling to Preserve Fertility, US Study Finds – Advances in CF treatment have more individuals considering parenthood. This study indicates that fertility counseling needs to be added to CF support services. 12/23/2021 - Advice to share with your employers if you're worried about going into work – This guidance was crafted for the specific situation in the UK but can be readily adapted to local circumstances. 12/24/2021 - Prioritizing Myself This Holiday Season – On the day that many holiday celebrations begin, this blog is a good reminder of the balance between protecting your health and socializing. The article also reminds us that caution extends to viruses other than COVID. 12/25/2021 - The Memory of a Therapy Dog Calls to Mind the Comfort of Pets – Knowing someone who received a puppy as a Christmas present, this story seemed to be just right for sharing today. 12/26/2012 - Humble lizards offer surprising ...

Dec

CFFC Facebook Posts – December 2021 – Part 1

12/03/2021 - Way of Creating Bile Duct Cells May Help to Treat CF Liver Disease – With all of the attention on lung disease, we may overlook the damage CF can do in other organs. This research offers hope of treatments other than transplant for liver disease. 12/04/2021 - “During Hannukah, I feel the miracle of light inside me”: Elle’s story – This story from Russia (via the UK) mentions the difficulty of health care in a remote region of the country but concentrates on the positive aspects of this holiday season. 12/05/2021 - Exercise to Improve Your Strength and Endurance With CF – Exercise is known to improve CF outcomes. This blogger is obviously a proponent of that approach. 12/06/2021 - Self-compassion Tied to Better Quality of Life in Adults With CF – This study may hold a key to improved mental health in the CF community. 12/07/2021 - Cystic Fibrosis Around the World: Morocco – Missed this when Gunnar Esiason first posted it. Two take aways. (1) CF does not discriminate in the populations it affects. (2) We are fortunate to have the advanced CF care in our country. 12/08/2021 - Researchers crack the synthetic code of rare molecules sought after in drug development – Who knew that toxic waste could be beneficial. This research produced a molecule that has shown antibiotic properties against resistant bacteria. 12/09/2021 - Fighting back: Toby, 11, becomes first carded boxer with CF – Not sure that we would recommend boxing as a preferred exercise, but this young man shows that the pursuit of a dream can also be the pursuit of better health. 12/10/2021 - CF Foundation Awards More Than $1.8M to Three Companies for Genetic Therapies Research – While CFTR modulators have proven highly effective for large segments of the CF community, efforts continue to develop viable genetic therapies. 12/11/2021 - It’s Hard to Get Into the Spirit of the Holidays – This blogger shares the mixed emotions that come with winter holidays for those with chronic illness.

Dec

CFFC Facebook Posts – November 2021 – Part 2

11/16/2021 - After a Lung Infection and a Pandemic, I Finally Ran the Boston Marathon – A story of grit from a member of the TEAM CF Boston Marathon Team. [NOTE: Rochester's own Chris Kvam was also a member of that team.] 11/18/2021 - Herbal Remedies Play a Role in Maintaining My Good Health – Herbal remedies may work well in addition to (not instead of) pharmaceuticals. 11/19/2020 - There's Still Time to Get Covered – Cystic Fibrosis Foundation Compass staff remind us that there is still time to get or adjust insurance coverage before the open enrollment period ends on 12/07/2021. Compass can help you with this process; however, their offices will be closed next week (11/22-26). 11/20/2021 - My Disabilities Grant Me Accommodations, but Give Me Guilt – This blogger explores one aspect of the emotional toll of chronic illness. 11/21/2021 - How Finding Other Mothers to Share the Good and Bad of CF Helped Me – Perhaps the best guide after a CF diagnosis is someone who has already traveled that path. CF Foundation's Peer Connect (as mentioned is this blog) is one source. CFFC can also help find someone with a shared experience to talk with you. Send a note to info@cffamilyconnection.org if you're interested. 11/22/2021 - Elexacaftor Also Works as CFTR Potentiator, Study Says – Research continues to find new combinations that help CFTR to work effectively. 11/23/2021 - Celebrating an important anniversary in Pseudomonas aeruginosa research – This article describes three key things learned about Pseudomonas in the 21 years since its whole genome sequence was identified. 11/24/2021 - Children With CF and COVID-19 – An update on the what has been learned about the impact of COVID on the CF community. 11/25/2021 – Happy Thanksgiving – Today is a good opportunity to step away from the busy world and give thanks for the good parts of our lives. 11/26/2021 - Cystic fibrosis faithfully modeled in a human Lung Airway Chip – Technology could help bring much ...

Nov

Clinical Trial Alerts – November 2021

Cystic Fibrosis Foundation issued the following clinical trial alerts in November. November 19, 2021 Study to evaluate Creon in adults with cystic fibrosis or chronic pancreatitis Status: Enrolling Description: This study will look at the symptoms of exocrine pancreatic insufficiency (EPI) in adults with cystic fibrosis or chronic pancreatitis treated with Creon with an alternate source of active drug. Creon is a drug approved to treat EPI.  Age: 18 Years and Older Mutation: No Mutation Requirement Fev1% Predicted: No FEV1 Limit Number of Visits: 3 Length of Participation: 142 days ClinicalTrials.gov link: https://clinicaltrials.gov/ct2/show/NCT05069597 November 30, 2021 Study of the triple-combination modulator, elexacaftor/tezacaftor/ivacaftor, in children 2-5 years old with cystic fibrosis (Part B) Status: Enrolling Description: This study will look at the safety and effectiveness of the triple-combination therapy, elexacaftor/tezacaftor/ivacaftor (Trikafta®), in children ages 2-5 years old with CF. These drugs are intended to help CFTR protein function closer to normal. Age: 2 Years to 5 Years Mutation: Two Copies F508del or One Copy F508del Fev1% Predicted: No FEV1 Limit Number of Visits: 9 Length of Participation: 32 weeks ClinicalTrials.gov link: https://clinicaltrials.gov/ct2/show/NCT04537793

Nov

CFFC Facebook Posts – November 2021 – Part 1

11/02/2021 - CF Donut is Cystic Fibrosis Australia’s attempt at answering the unanswerable. - This page links to 26 pages that present information on the impact CF has on your physical and mental health. 11/03/2021 - Study Unravels Patterns of Pseudomonas Evolution in Infections – An interesting discussion of “pathoadaptation” (how bacteria evolve) which could form the basis for new treatments. 11/04/2021 - How CF Care Adapted to Meet the Challenges Posed by COVID-19 – A blogger offers her personal story to provide context for one of the plenary sessions at the North American Cystic Fibrosis Conference. 11/05/2021- Diwali and CF: Hetal’s story – People living with CF have a lot in common but everyone has there unique experience. This blog points to differences that arise from cultural backgrounds. 11/06/2021 - Understanding Median Predicted Survival, Life Expectancy and the Rapid Progress in Cystic Fibrosis – Gunnar Esiason uses plain English to explain updates on statistics from the Cystic Fibrosis Foundation CF Registry. 11/07/2021 - Bacteria Changes, Inflammation Evident in Lower Airways at Age 2 – Once again, basic research that can lead to earlier intervention in lung disease. 11/08/2021 - Expanding Treatment Options for Everyone Who Has CF – If you don't have time to watch the NACFC recordings, this blog gives a good summary of one of the plenary sessions. 11/09/2021 - What We Talk About When We Talk About COVID-19 – This is an interesting discussion of what we can learn from the emotions generated by the pandemic. 11/10/2021 - Sweat-collecting patch inspired by cactus spines – Although CF isn't mentioned in this article, more efficient sweat collection can be an aid in CF diagnosis and research. 11/11/2021 - Phage Therapy, Now in Trial, Weakens Resistant Bacteria – Summarizing a presentation at NACFC, this article reports on progress towards treatments that can overcome infections resistant to antibiotics. 11/12/2021 - Five highlights from the North American Cystic Fibrosis Conference (NACFC) – Not much ...

Nov

CFFC Facebook Post – October 2021 – Part 2

10/16/2021 - Black History Month: Understanding diversity in our community - Don't be confused: Black History Month is in different section of the calendar in the UK. The outcomes of the study mentioned in this article are like to to be relevant on this side of the Atlantic. 10/17/2021 - Balancing CF With My Physically Demanding Job – Within this interesting story, the blogger offers good advice: “slow down when needed.” 10/18/2021 - Epicore Launches Wearable Patch to Analyze Sweat of CF Patients – Noninvasive tests always a plus. With the advent of CFTR modulators, sweat tests have significance beyond initial CF diagnosis. 10/19/2021 - Another Year, More Holiday Cheer – Brighten up your home – or the home of a friend with CF – with a holiday wreath or poinsettia. Check out the details in the linked article. [NOTE: Offer is now closed.] 10/20/2021 - Development of gene therapy treatment for cystic fibrosis moves to the next stage – Good things are happening in the UK regarding gene therapy. 10/21/2021 - Letting Go of People Who Didn’t Accept My CF – This blogger shares her struggle in finding the balance between “fitting in” and “being yourself.” 10/22/2021 - Tomorrow’s Leaders Career Growth Panel – An opportunity to hear from five local individuals on how they found their way to success. [NOTE: Event will be held on 11/10] 10/23/2021 - Gut Microbiome Slow to Develop, Offer ‘Normal Benefits’ in CF Infants – This may be more than you wanted to know about intestinal bacteria, but the study could lead to improved nutrition for CF kids. 10/24/2021 - Moving the development of new antibiotics for CF lung infections closer to the clinic – This new approach to antibiotics testing based in the UK, and co-funded by the US CF Foundation, will benefit researchers around the world. 10/25/2021 - Making Tough Decisions To Keep Our Daughter Safe – Dealing with the pandemic is tough. Having your first child is tough. Having a child with CF is tough. ...

Oct

Here is the announcement from Cystic Fibrosis Foundation regarding recorded sessions from BreatheCon 2021. BreatheCon is a two-day event for adults with cystic fibrosis, which was held on Sept. 24-25, 2021. For the first time, we are making select recordings available whether or not you were able to attend.  View the BreatheCon YouTube Playlist Available sessions: All sessions are available with English subtitles. Opening Keynote Is It Time to Eat?: A Panel Discussion About Nutrition, Body Image, and Mindset Navigating & Conquering Insurance Life with a Rare or Nonsense Mutation Therapy 101: How to Understand, Access, and Afford Mental Health Services The Ups and Downs on Trikafta Sesiones disponible con subtítulos en español: Estamos orgullosos de compartir que algunas de las grabaciones de las sesiones de nuestra conferencia virtual, BreatheCon 2021, tienen subtítulos en español. Aquí están los enlaces a las sesiones que están disponibles con traducción al español: La Vida con una Mutación Rara o Sin Sentido de la Fibrosis Quística Introducción a la Terapia: Cómo Entender, Tener Acceso y Costear Servicios de Salud Mental Los Altibajos al Tomar Trikafta How to turn on subtitles / Cómo activar los subtítulos To view the English subtitles, select the "settings" icon, choose "subtitles", and then select English. Para ver los subtítulos en español, seleccione el icono de "configuración", elija "subtítulos" y luego seleccione español. We hope you enjoy all the information created for you by CF community members. We hope to see you next year for BreatheCon 2022 to get the full experience, including connecting one-on-one and in small-group discussions with other adults with CF. Join us to connect, share, and learn through open and honest dialogue. - BreatheCon 2021 Co-ChairsSarina Sandstrom and Olivia Clark