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CFFC Facebook Posts – August 2019 – Part 1

08/01/2019Data Safety Monitoring Board – This article describes the safety oversight that the CF Foundation provides for clinical trials in addition to the procedures employed by government agencies and research institutions.

08/02/2019Andrew W. Eve Memorial Scholarship – At this mid-point of summer, you may be making preparations for college. The Andrew W. Eve Memorial Scholarship may help you with your financial planning.

08/03/2019Using Nebulizer While Lying on Alternating Sides Can Better Deposit Therapy Across Lungs, Trial Finds – This article notes that researches not only look into the components of CF treatment, they also look at how the treatments are delivered.

08/04/2019Cystic Fibrosis Newborn Screening – In this video, staff from Cincinnati Children’s Hospital explain their protocol for newborn screening.

08/05/2019Hospital Help Packets – Hospital Help Packets have been the cornerstone of support offered by CFFC since its inception. Learn about, or refresh your memory on, the program at this link.

08/06/2019Translate Bio’s MRT5005 May Improve Lung Function With a Single Dose, Interim Trial Data Shows – The preliminary results of this trial show the potential for a CFTR correction that is independent of the mutation type.

08/07/2019Opening Up About My Struggle Getting Pregnant – With the advances in treatments, the majority of people living with CF are adults. The benefits of adulthood come with new challenges. This blog presents the struggles that may be encountered when pursuing parenthood.

08/08/2019Local cystic fibrosis patient gets help from ‘The Bachelor’ star Colton Underwood – In case you missed the broadcast of this piece on August 6th, here’s the story of Olivia Maniace from Batavia. Aside from the human interest aspect of the story, you can get a peek at a battery operated vest.

08/09/2019Italfarmaco, Neupharma Partner to Develop Inhaled Form of Teicoplanin to Treat CF Lung Infections – The move from intravenous to inhaled administration of drugs not only means fewer sticks, but also more freedom during treatments.

08/10/2019Just Because I Can’t Work Doesn’t Mean I Am Lazy – With the growing CF adult population, the old “you don’t look sick” attitude takes on new dimensions.

08/12/2019Healthcare Could Use the Kinesthetic Empathy of Dance – This blog post touches on the emotional needs for those dealing with chronic illness.

08/13/2019Decision means tragic wait for life-saving drugs continues – This article gives insight into the challenge to obtain new CF treatments on the other side of the Atlantic.

08/14/2019Living with CF Golf Tournament – Only one month to go! Join in the fun and support a good cause.

08/15/2019 – Our Relationships with Our Doctors Are Stronger When We Self-advocate – Another encouragement to be your own chief advocate.

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