For our web visitors who do not follow CFFC on Facebook, here are the posts added in the second half of January 2017.
01/16/2017 – Clinical Trial Alerts – January 2017 – Two more clinical trial alerts have been added to our listing for January.
01/17/2017 – Inhaled Glutathione Not Advisable Therapy for All CF Patients, Study Says – While the treatment results may be less than hoped, this study may provide a tool for assessing the level of inflammation in the lungs.
01/18/2017 – Cystic Fibrosis in the Workplace – This podcast from Gunnar and Julia explore a topic that adults (and some young adults) living with CF will face in the pursuit of a “normal” life. Their discussion shows that there is no right answer for every situation.
01/19/2017 – Congress Approves Budget Resolution: First Action Step Toward Health Care Reform – CFF’s take on the current Congressional activity regarding the Affordable Care Act.
01/20/2017 – Dutch Validation Trial to Test Use of ‘Organoids’ in Studying CF Therapies – Another study looking for a methodology to tailor treatments to the individual.
01/21/2017 – 7 Tips for Taking a Vacation Without Your Kid With CF – Caregivers for individuals with chronic disease need an occasional break from the responsibilities to avoid burn out. Here’s a guide to preparing for an extended escape from the routine.
01/22/2017 – Clinical Trial Alerts – January 2017 – CFF sent two more clinical trial alerts this week. Most recent alerts are listed first on the web page.
01/22/2017 – Patients, Parents Fearful of Initial Bacterial Lung Infection, Survey Finds – Psychology is an important component of treatment in chronic disease. This study suggests that care must be exercised in sharing news about Pseudomonas colonization.
01/23/2017 – Meet Our Seven Impact Grant Awardees – CFF acknowledges a wide variety efforts to improve the lives of those living with CF.
01/24/2017 – Enzyme That Degrades Biofilm May Be Key to Treating Pseudomonas Lung Infection in CF – More research into treatments that can break down the Pseudomonas defenses.
01/26/2017 – 2017 Kit Taylor Lecture Announced – We’re looking forward to another relevant and timely presentation at this year’s lecture
01/27/2017 – Perseverance, Resiliency and Erin Andrews – Gunnar Esiason shares some examples of powering through hard time, but he also reminds us that there are may warriors in the CF community.
01/28/2017 – Why Parents Are Key Members of Their Children’s CF Care Teams – Another aspect of advocacy: the on-site observer who gives the CF professionals valuable data for managing CF care.
01/29/2017 – Work on Pulmatrix’s PUR1900 for Fungal Infections in CF Patients Bolstered by FDA – We talk a lot about bacterial infections, but fungal infections are also problematic. Here’s some news on that front.
01/30/2017 – How Are You Feeling? – This discussion by Gunnar and Julia delves into the balance between caring about someone’s well being and asking a seemingly simple question that may be annoying. A good listen for those who interact with people living with CF.
01/31/2017 – CFF Leader Talks About ‘Open Letter’ to President and Concerns with Healthcare Reform – In an interview with Cystic Fibrosis News Today, Mary B. Dwight, senior vice president for policy and patient assistant programs for the CFF, talked about the Foundation’s efforts to maintain components of the Affordable Care Act that are critical to the CF community.