Seven posts were made to the CFFC Facebook page during the week of 5/19-25/2024.
05/19/2024 – Family Day Update – As previously announced, CFFC Family Education Day is returning to an in-person event at Wickham Farms on August 4th. To help us with planning and simplify admission, we are asking attendees to preregister. You can find an on-line registration form, as well as details about the day, in the CFFC calendar entry linked here.
05/20/2024 – Hospital Help Program Update – Hospitalizations can be stressful times for CF patients and their families. In an effort to relieve some of that stress, CFFC established the Hospital Help Program (HHP) to assist with costs not covered by health insurance.
In the past, the primary component of the HHP was a supply of parking passes for the Strong or Highland garages. Providing parking passes has become increasingly problematic. Also, not all hospitalizations occur at those two hospitals.
To address these concerns, CFFC will now make a cash grant to any individual living with CF who is admitted to any hospital. (In the case of a minor child, the grant will be made to a parent or custodian.) We are offering three virtual options for delivering the grants and are willing to discuss other methods.
Read more about the revised program (including eligibility criteria) on the CFFC web page linked here. That page also includes online application forms for each grant option.
05/21/2024 – Living with CF Golf Tournament – In the past two days, we have shared news about ways CFFC serves the local CF community. Today, you can read about how you can help CFFC by playing in the Living with CF Golf Tournament – our only fund raising event.
05/22/2024 – Drug-like inhibitor shows promise in preventing flu – Influenza affects the entire population but can be more serious for the CF community. A drug to prevent (or significantly limit) flu infections would reduce the risk of exacerbation.
05/23/2024 – Finding Stability in the Unknown – Those living with CF who are not eligible for Trikafta may feel like they are living in the margins. Consider, then, someone living with a CFTR-related disease who is not diagnosed as having CF.
05/24/2024 – Phage therapies found to induce individualized antiviral response – Phage therapy is a promising approach to treat chronic infections. This study increased the understanding of the effects different forms of phages have on lung cells.
05/25/2024 – “A life unlimited means to love and be loved”: CF parents Emma and Mason share their story – New-born blood tests have greatly improved early CF diagnosis; however, this story demonstrates that the process does not guarantee timely diagnosis.