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CFFC Facebook Posts – May 2016

For those of you who don’t follow CFFC on Facebook, here are the original posts made to our page during May 2016.

05/03/2016Pilot Program to Help CF Families Navigate Care Systems Reports Initial Success – This article in Cystic Fibrosis News Today points to a new approach that may not only improve outcomes but could reduce the stress of managing chronic illness.

05/04/2016Navigating the Limits of CF – Another story from the CFF Community Blog.

05/05/20164 Questions to Ask Your Insurance Company When Your Prescription Gets Denied – Every have trouble with insurance for your prescriptions? Here are some tips.

05/07/2016Difficult CF Mutation May Be Treatable by Targeting Its CFTR Defect Indirectly via Proteins, Study Suggests – Another potential approach to dealing with the CFTR mutation.

5/09/2016CF Foundation | Reflections on Clinical Trials – A video from CFF encouraging participation in clinical trials.

05/10/20166 Cystic Fibrosis Organizations You Should Know About – Cystic Fibrosis News Today reminds us of the number and variety of organizations striving to improve life with CF.

05/11/2016Googling CF is Not Googling Me – This post from CFF’s CF Community Blog discusses the need for an individuals identity including, but not defined by, CF.

05/13/2016 – Cystic Fibrosis and Carrier Screening Explainer – This video from Australia provides a concise explanation of CF genetics and carrier screening. The information is equally relevant in the northern hemisphere. 🙂
05/14/2016Clinical Researchers Prep for Record Year of Trials – CFF discusses its efforts to ramp up support for an increasing number of clinical trials.

05/15/2016Cystic Fibrosis Group Partners with Vogmask to Offer Stylish Way of Avoiding Air Contaminants – In the near future, you will be able to pay attention to your lung health without sacrificing your fashion sense.

05/17/2016Meet “Our Cystic Fibrosis Journey!” – This article from Cystic Fibrosis News Today announces a YouTube channel dedicated to personal stories of life with CF. The announcement introduces seven people who will post to the channel, one on each day of the week. We will post links to the more interesting videos.

05/18/2016What’s in My Diaper Bag? – Some useful advice for those just starting out on the CF journey from the CFF Community Blog.

05/19/2016Adjusting to Life After Baby – As a follow up to yesterday’s post from a mother of a child with CF, here’s an entry from the CF Community Blog by a mother with CF.

5/20/2016How to Access a Port-A-Cath (Implanted Port) – This video is for those interested in greater independence (with tolerance for needles and a little blood). We are not recommending this approach. As with every treatment, you should discuss this option with your CF care team.

05/21/2016Newborn Screening for CF Linked to Better Pubertal Growth and Adult Height – One more reason to be glad that NY includes CF in newborn screening protocols.

5/22/2016Invisible Illness: Dancing Through Cystic Fibrosis – A personal story of the challenges of living with an “invisible disease” – plus a bonus plug for exercise.

05/23/2016 – New Antimicrobial Peptide May Be Able to Treat Even Drug-Resistant CF Lung Infections – Hope for a new weapon in the arsenal to fight chronic lung infections.

5/24/201612 Benefits of Having Cystic Fibrosis – A tongue-in-cheek look at the “good” things in life with CF. [My personal favorite is #7]

05/25/2016Getting to Love My Wife Was Worth Every Second – A sad story from the CFF Community Blog, but a story of love worth telling.

5/26/2016Can tai chi benefit people with cystic fibrosis? – A brief video from Cystic Fibrosis Trust showing preliminary results from research into the benefits of tai chi.

05/27/2016New Compound Seen to Treat CF-linked Lung Ailments Independent of CFTR Mutation – Another avenue of research to improve lung function.

05/28/2016Fighting for the Perfect Body: A Healthy One – “Body image” from the CF perspective.

529/2016Pep Talk for CF Kids! – A message geared to the younger CF community.

05/30/2016ProMetic to Begin Phase 2 Clinical Trial of Anti-Fibrotic Oral Drug in CF Patients – Research into addressing another problematic aspect of CF.

05/31/2016Cystic Fibrosis Clinical Trials – Here’s another database for investigating what’s going on in CF research. The database includes studies being conducted in countries outside the US.


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