Eight posts were made to the CFFC Facebook page during the week of 1/22-28/2023.
01/22/2023 – Cystic Fibrosis: Amber’s Story – We all know people who earn the title of CF Warrior.” Here’s the story of a young woman who expanded that title to “CF Ninja Warrior.”
01/23/2023 – Gut-lung Axis Likely in CF, High-fat Diet May Drive Inflammation – It is often thought that eating anything high in calories was okay in a CF diet. This study, while preliminary, suggests that “junk food” diets contribute to higher rates of inflammation – in the lungs as well as in the digestive tract.
01/24/2023 – Sarah’s story: “You need that one person who understands you without saying a word” – This blogger shares here approach to overcoming the isolation from cross-infection protocols.
01/25/2023 – How I Got Through the Forest Fires in Oregon – Your perception of a story from the national news takes a new shape when you view it from someone’s personal experience.
01/26/2023 – Symdeko Found Safe, Effective For Up to 4 Years in Phase 3 Trial – The hope for “miracle” drugs is that the benefits will not be short lived. This extended trial of Symdeko (a forerunner of Trikafta) showed no decrease in efficacy over an extended period.
01/27/2023 – Caleb: Cystic Fibrosis Drug Helps him Live his Basketball Dreams – This story is a little old but you can get the gist of story if you replace “Orkambi” with “Trikafta.”
01/27/2023 – CF Community Attitudes on Clinic [NOTE: application period is closed] – The Cystic Fibrosis Foundation issued the following call for volunteers to assist in the creation of a survey to assess community attitudes on discussing social risk factors in clinic.
“The CF Foundation is committed to understanding the impact of social determinants of health and exploring opportunities to minimize any negative effects on CF care. Building on ongoing efforts to increase knowledge and engage the CF community in identifying a plan moving forward, we have an opportunity for the community to share their perspectives on discussing this topic in clinic.
“We are looking to recruit 7 adults with CF and 7 parents/caregivers of children with CF to participate in 30-minute interviews to inform an upcoming survey in development. This survey will assess community attitudes on discussing social risk factors in clinic.
“We are looking for a diverse group of participants with a variety of experiences related to challenges paying for the things needed to manage CF, for example, food insecurity, transportation challenges, housing challenges, inability to pay for medications, or other social needs. Participants will be asked to share their experiences, stories, and opinions, about discussing these challenges in clinic, as well as their comfort level receiving support on these topics from their care team.
“Participants will be asked to complete a 30-minute interview in mid-late February over a secure teleconferencing platform (Zoom). For those who are unable to participate in the live interview, there will be an offline participation option. Selected participants will be contacted for interviews in early February.
“If you are interested in this opportunity and would like to apply, please click the button below. This interest form will close on Tuesday, February 7th at 11:59 p.m., ET. Leaders of these projects will review completed interest forms and invite individuals to interview based on the information provided. Final selections will be made, and all applicants will be notified by mid-February.”
01/28/2023 – The Reality of an Infusion Set Change With CF-related Diabetes – Managing CF-related diabetes, like all aspects of CF, is a combination of miracles paid for with offsetting inconveniences.