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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.

05/16/2018Monday 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.

05/17/2018Sasha’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.

05/18/2018Partnering 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.]

05/20/2018Managing 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.

05/21/2018Research Leads to Approval of Combination Drug to Treat CF – Great discoveries being made just down the road from us.

05/22/2018Monday 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.

05/23/2018Toothpaste ingredient may bust up cystic fibrosis biofilms – Science can find good news in unexpected places.

05/24/20187 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.

05/25/2018Answering the Dreaded Question: “How Are You Feeling?” – Some good advice both for people living with CF and fot those who care about them.

05/26/2018Long-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.

05/27/2018I 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.

05/29/2018Nitric 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.

05/30/2018Traveling With CF: Plan Ahead, Be Flexible, and Accept Help – Some more thoughts on healthy travels

05/31/2018Right 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.

 


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