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CFFC Facebook Posts – January 2018 – Part 2

For our web visitors who do not follow CFFC on Facebook, here are the posts added in the second half of January 2018.

01/16/2018Stemcell Develops New Mini-guts Line Grown from CF Patients to Test Therapies – This article notes the evolution from scientific discovery to normalized production of laboratory grade material made from adult stem cells.

01/17/2018How Meditation Is Keeping Me Going – Lest we forget that emotional health is a critical aspect of CF care, here’s one woman’s answer to dealing with stress and depression.

01/18/2018Potential Nitric Oxide Treatment for Resistant Bacterial Infections Gets Patent, May Start Clinical Testing – Another step toward a new vector for attacking Pseudomonas.

01/19/2018Participate in the CFF Insurance Survey – You can add your voice to building CFF’s health insurance programs and advocay.

01/20/2018Don’t Be a Hero – This blog has universal application but it is more significant for those who live and work around people living with CF.

01/21/2018Advancing the GI frontier for patients with CF – This article seems geared to medical professionals but there is good background material. Also, if you’re experiencing GI issues, you can point your caregivers to these resources.

01/22/20184 Tips for Combatting PFT Anxiety – Apparently, schools are not the only places where you study for exams.

01/23/2018Community News – Allie Davis – An example of how CFFC can share information regarding individuals in our community.

01/24/2018University at Buffalo Researcher Honored for CF Mental Health Work – This award highlights the importance of mental health in CF care – and the latest honoree works just an hour away from Rochester.

01/25/2018Primer on Gene Editing and Stem Cells – A new link has been added to the CFFC web site that connects you to an article in the Journal of Cystic Fibrosis that provides basic information on gene editing, stem cells, and the legal and ethical issues associated with these topics.

01/26/2018How I Decided on a G-Tube for My Son – This blog post, the first of a three part series., deals with the difficult decision to move to tube feeding in a young child.

01/27/2018 – 10 Little-Known Weird Facts About Cystic Fibrosis – Here’s some material you can use if you want to spice up your routine discussions of CF.

01/28/2017Cystic fibrosis bacterial burden begins during first years of life – This article reports on studies that show promise in delaying or reducing the onset of chronic lung infections.

01/29/2018 – Our Rochester Adult CF Clinic has shared the following announcement:

It is with excitement that we announce a new quality improvement initiative here in Rochester at our Adult CF Center! The goal of this year-long project sponsored by the national CF Foundation is to improve the care of CF patients with advanced lung disease who are in need of referral for lung transplantation.  We are paired with the UPMC lung transplant center in Pittsburgh, PA to work collaboratively on improving the referral process and post-transplant care coordination of lung transplant patients.  The project kickoff was in Chicago, IL in October and work will continue until the NACFC in October, 2018.  Teams are having weekly meetings and monthly teleconferencing with all 20 CF and lung transplant centers involved in the LLC (learning/leadership collaborative) across the country.  In-person meetings will also take place in Washington, D.C. in March, 2018 and Toronto, Canada in June, 2018.

We are committed to this project and to our CF community as a whole! If you have any questions or curiosities regarding this project, please contact your Center, or any team member!

Rochester Team Members:  Steven Scofield, MD; Donna Germuga, RT; Elle Woodworth, RD; Shandell Moreno, physician support specialist; Lisa Brady, family member

Pittsburgh Team Members: Joseph Pilewski, MD; Matthew Morrell, MD; Shannon Whiteman, RN, Eric Wright, CF patient

Team Coach: Ian McIntosh, Director of Healthcare, Cystic Fibrosis Canada

01/30/2018Life Planning When You or Someone You Love Has CF – This blog introduces a new resource available through CFF.

01/31/2018AIT’s Nitric Oxide Mist Lowers CF Patients’ Airway Bacteria by 65%, Phase 2 Trial Shows – This study was focused on Mycobacterium abscessus which, according to NIH, is a significant factor in lung disease.

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