Seven posts were made to the CFFC Facebook page during the week of 2/5-11/2023.
02/05/2023 – Personal patient story – Cystic Fibrosis – This story comes from Israel. The details show that life with CF has similarities regardless of where you are in the world.
02/06/2023 – Less Muscle Activity Tied to Poor Bone Health for CF Children – This research adds another reason to encourage exercise as part of the CF care regimen.
02/07/2023 – How CF Taught Me To Appreciate Life – This woman’s story – like everyone’s – is both familiar and unique. It’s interesting that, after describing extended bouts of pain and surgery, she considers her version of CF to be mild.
02/08/2023– “Be curious and enthusiastic about discovering the world around you” Celebrating International Day of Women & Girls in Science – As you enjoy the coming weekend, take a moment to consider the contributions these five women are making to better lives for those in the CF community.
02/09/2023 – Genetic Counseling Needs in the CF Community – [NOTE: enrollment in this study is closed.] CFF Community Voice has circulated the following call for focus group volunteers.
Researchers from Lenox Hill Hospital/Northwell Health, Johns Hopkins Medical Institute, and Brigham and Women’s Hospital are looking to understand the needs, preferences, and challenges of obtaining expert CF-specific genetic counseling services for those in the CF community.
Genetic counseling is the process of guiding and supporting patients seeking information about how inherited diseases and conditions might affect them or their families and interpreting genetic test results based on personal and family history.
Learning about the community’s experience and needs is key to being able to provide telehealth genetic counseling services as part of clinical care. Parents of children with CF, people with CF, and partners of adults with CF are invited to participate in focus groups.
Focus groups will be held via secure video conferencing service in March 2023. Participation includes attending one 90-minute session. Focus group participants will be asked to discuss and reflect on your own experiences and perspectives as well as the needs of others in the CF community.
To serve the full community, it is important that we hear from diverse and underrepresented voices, including from those who cannot benefit from current CFTR modulators, people of color, men, those in the LGBTQIA+ community, those who have gone through a lung transplant, and other experiences. Hearing from broad and diverse perspectives promotes equity by ensuring every person affected by CF can share their unique experiences and insights.
If you are interested in participating in these focus groups, please fill out the interest and availability form by Monday, February 20th at 11:59 p.m., ET.
Participants will receive $50 after taking part in the focus group.
02/10/2023 – CFTR Mutations Impair SARS-CoV-2 Virus, Study Finds – It was previously observed that people living with CF were less affected by COVID than anticipated. This study explains why.
02/11/2023 – Autoimmune Disease in People with CF – [NOTE: this survey is closed.] CFF Community Voice circulated this call for volunteers to respond to a survey concerning autoimmune disease in people with CF.
Researchers at the University of Florida are conducting a survey of people with cystic fibrosis (CF) or parents of children who have CF who have experienced symptoms such as arthritis, rash, unusual gastrointestinal symptoms or who have been diagnosed with an autoimmune condition in addition to CF. Little is known about symptoms that might lead to an evaluation for autoimmune disease. The goal of this survey is to understand symptoms in people with CF that might suggest an autoimmune disease and to gain community insights into the experiences of people with CF who have been diagnosed with an autoimmune disease.
The study team in interested in hearing from all adults with CF and parents/caregivers of children with CF who have ever had arthritis, rash, unusual gastrointestinal symptoms or who have been diagnosed with an autoimmune condition. If you would like to participate in this anonymous, 6-8 minute survey, please click on the link below by February 21st, at 11:59 p.m., ET.