CFFC Facebook Posts – November 2019 – Part 1
11/02/2019 – Tools and Tips for Parents of Kids with CF – This page has links to a wide range of information resources for families of a child with CF. The topics cover issues faced by the family members as well as the challenges experienced by the child.
11/03/2019 – I Have Two Nonsense Mutations. Here’s What a Path to a Cure Means to Me – This blog post is a good reality check in the wake of the news about Trikafta.
11/04/2019 – Alaxia Joins iABC to Speed Development of ALX-009, Potential Antibiotic for Resistant Lung Infections – With the recent attention on the advance in CFTR modulators, it’s important to also recognize the efforts being made to fight lung infections.
11/05/2019 – CF Roundtable Autumn 2019 – CF Roundtable is a great resource. The focus topic of this issue fits nicely with our recent coverage of CFTR modulators. The various stories will give you a good perspective whether or not you are currently using a CFTR modulator.
11/06/2019 – Cystic Fibrosis: The Physical and the Mental – We can’t say it too often: mental health is an equal component in the challenge of CF.
11/07/2019 – CF research: this time it’s personal – Here’s a story from the UK about someone with CF (and not the first) taking an active role in solving the mysteries of CF.
11/08/2019 – $15 million cystic fibrosis research program launched – This announcement from the University Of Queensland (Australia) reminds us that research to combat CF’s challenges takes place around the world.
11/09/2019 – Bionic Pancreas May Be Useful in Managing Blood Sugar Levels in Adults with CFRD, Small Study Says – As noted in this article, CFRD is the second most common complication of CF after lung disease. This research points to a solution that could ease the management of CFRD.
11/10/2019 – CF Is Predictably Unpredictable – Isolation in CF can take many forms. This blog talks about the isolation that can result from unpredictability.
11/11/2019 – Five big questions at NACFC – A look at the North American Cystic Fibrosis Conference from the other side of the Atlantic.
11/12/2019 – Learning How to Live – Gunnar Esiason writes about his experience – and changed perspective – with Trikafta.
11/13/2019 – Latinos on 2 Caribbean Islands Carry CFTR Mutations Seen in 1% of CF Patients Elsewhere, Study Says – This article highlights gaps in CF statistics which lead to gaps in research studies.
11/14/2019 – My Self-Advocacy Saved Me From Surgery – One of the things you can’t say too often about CF care is be an advocate – a strong advocate – for yourself.
11/15/2019 – Webinar: CF Research Progress: The Community’s Voice in Action – CFF Community Voice is giving you a chance to catch up on current research initiatives from the comfort of your home. This CFFC calendar entry includes a link to the program registration.