CFFC Facebook Posts – May 2018 – Part 2
For our web visitors who do not follow CFFC on Facebook, here are the posts added in the second half of May 2018.
05/16/2018 – Monday Morning Thoughts: Telemedicine, Stop Comparing CF to Other Illnesses, CF Awareness Month – Some of Gunnar’s Monday thoughts. Is it okay to share this on a Wednesday or a week late? Why not if it offers some interesting things to think about.
05/17/2018 – Sasha’s Family: Living for a dream, with CF – Here’s a heart warming story that demonstrates the philosophy that living with CF without letting CF define your life.
05/18/2018 – Partnering with Your Care Team – Lessons learned at prior CFFC Education Day events are being incorporated in the CF Foundation Care Model.
05/19/2018 – ‘Sham’ or public interest? ICER suggests 70%-plus discounts on Vertex’s cystic fibrosis drugs – This article brings the CF community into the national debate on health care costs. [NOTE: CFFC is not staking out a position in this debate; we are just raising awareness of the issue.]
05/20/2018 – Managing a full-time job and CF – Despite the title “Managing a full-time job and CF,” the three Canadians in this blog describe their inability to sustain this goal.
05/21/2018 – Research Leads to Approval of Combination Drug to Treat CF – Great discoveries being made just down the road from us.
05/22/2018 – Monday Morning Thoughts: Sterilizing Nebs on The Go, G-Tube Body Image, and Aussie Bro Donates Blood, Saves 2 Million Babies – It doesn’t matter that these Monday thoughts are a week and a day old – they’re still interesting.
05/23/2018 – Toothpaste ingredient may bust up cystic fibrosis biofilms – Science can find good news in unexpected places.
05/24/2018 – 7 Questions to Ask Your Doctor Before Starting A New Medication – Being an informed patient is a big part of effective health care; therefore, learning about the medications being prescribed for you is essential.
05/25/2018 – Answering the Dreaded Question: “How Are You Feeling?” – Some good advice both for people living with CF and fot those who care about them.
05/26/2018 – Long-term Kalydeco Treatment Improves Clinical Outcomes in Cystic Fibrosis Patients, Study Shows – We are excited by the promises of new drugs, but the long-term effects prove the true value in changing the life of those with CF.
05/27/2018 – I Want The Cystic Fibrosis Foundation CF Patient Registry To Be An Open Source – This blog by Gunnar Esiason draws attention to an important issue: finding the balance between patient privacy and a deeper understanding of CF. CFFC is not taking position on this issue, but it is a topic we should all think about.
05/28/2018 – Lessons Learned Through Parenting and CF – This blog post was written by a mother with CF, but her lessons can be extrapolated to siblings, other relatives and close friends.
05/29/2018 – Nitric Oxide-Inhaled Therapy May Decrease Burden of Serious Lungs Infections, Study Shows – In this small study, nitric oxide demonstrated positive results and noted side effects resloved quickly.
05/30/2018 – Traveling With CF: Plan Ahead, Be Flexible, and Accept Help – Some more thoughts on healthy travels
05/31/2018 – Right to Try to be Signed Into Federal Law – Gunnar Esiason shares his perspective on federal legislation to give individuals with end-stage illnesses access to experimental drugs still in clinical trial status.