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CFFC Facebook Posts – April 2019 – Part 2

04/16/2019Do You Have a Nonsense Mutation? – Gunnar Esiaison introduces you to a community targeted at individuals with “nonsense CF mutations” (which are defined in the article).

04/17/2019Hiding My CF to Fit In Hurt My Health – One persons “coming out” story. Sound familiar?

04/18/2019BeADonor Month: Lung Transplant Resource – As part of Organ Donation Awareness Month, Cystic Fibrosis Canada has produced a list of CF lung transplantation resources. Some of the information is specific to care in Canada; however, you may find the information relevant. You may also find it interesting to compare the approach in Canada to the US.

04/19/2019Early Antibiotic Treatment Better to Eradicate New MRSA Infections in CF Patients, Study Suggests – Another study that indicates that the timing of a treatment is as important as the composition of the treatment. Although not specifically noted in the study, we are reminded that treatment results are not universal in the CF community.

04/20/2019Research Study on the Experience of Women with CF with Pregnancy – This links takes you to Cystic Fibrosis Ireland which is recruiting study participants. It’s not clear whether individuals from the US are eligible to participate. 9Before investing in an international phone call, there is an email address for inquiries.) At any rate, it’s good to see that someone is looking at this expanding frontier for the CF community.

04/21/201910 Ways To Redefine Success as a Parent of a Kid With CF – With all the challenges that come with CF, it is important to recognize the “wins” that make the effort worthwhile.

04/22/2019New Test Could Lead to Effectively Customizing Treatments for CF Patients, Study Contends – We’ve seen that individuals have differing reactions to CFTR modulators. This study indicates that there may be an approach to select the most appropriate formulation.

04/23/2019How Do I Stay Motivated? – Gunnar Esiaison talks about his motivations. How does his outlook compare to yours?

04/24/2019Common virus could speed up cystic fibrosis – This article reinforces the notion that there is more to treating CF than correcting the CFTR.

04/24/2019Strangers send 18 pizzas to teen in hospital after seeing note on window – You may have seen this already through Facebook connections or other news feed. Cole Favro is now a local hero. Hopefully it will be quite a while before he sends a plea from Highland.

04/26/2019Gene Editing In Utero May Prevent Fatal Lung Diseases After Birth, Mouse Study Suggests – A genetic correction for CF has been a dream since the identification of the CFTR mutation. Perhaps, this study brings us closer to that dream.

04/27/2019Watch the 39th Annual Kit Taylor Memorial Lecture – Check out Dr. Kelly’s lecture to up your understanding of CF related diabetes and other endocrine issues.

04/28/2019How One Blood Draw Helped Us Grow as Parents – This article covers a lot of the aspects of parenting through CF.

04/29/2019Stop Calling Me a “Fibro” – Gunnar Esiaison raises the topic of labels, the pros and cons.

04/30/2019 – Just 6 weeks to Education Day 2019! Please register to help us with the final plans. (It takes less than 5 minutes to complete the registration.)

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