For those of you interested in the new nutritional guidelines which were launched at this year’s Australian CF conference you can download a copy of them here. [This is the final draft but final copy not yet available online].
You’ll see these new guidelines not only promote a healthier more wholistic diet than previous CF recommendations. Moving away from any fat and sugar to make the calories add up – to an emphasis on good fats and heart health where possible. The guidelines also touch on vitamins and supplements – namely glutathione, probiotics to name a few emerging areas which have not been formally addressed before.
One of things we’ve been discussing at the 2017 Cystic Fibrosis Conference here in Melbourne is mental health. We’ve been lucky enough to have Dr Alexandra L Quittner who pioneered TIDES – the first large scale multi-country multi-centre mental health study in cystic fibrosis present to us; and it’s highlighted how mental health really needs to present alongside physiotherapists, dietitians and other care partners as part of a wholistic approach to CF health. Continue reading “How to build resilience”
Hopefully by now you’ve all seen the fantastic results that Vertex reported last week regarding their latest trials with precision therapy for those with both double DF508 and a single DF508 mutation combo. Vertex shares are up 21% and the reported results are pretty exciting. Although the trials were for patients 18 and older, it sounds like they’re fast tracking the next late stage trials (earmarked for early 2018) so let’s hope pediatric trials follow swiftly. Continue reading “Vertex reports great results for its latest trials targeting double DF508 and single DF508 combos”
What’s Stopping You Appointing A Patient Director? An open letter to all healthcare organisations
Continue reading “An Open Letter from Future Patient Org”
Heart Healthy Fats [Standford University CF Centre]
BY MARIANNE REES SCHROEDER, RD
Milk, butter, cheese — For most adults living with cystic fibrosis, those
food items are staples in an everyday high-calorie, high-protein diet.
Fat found in dairy products pairs well with most meals, and is excellent
at boosting calories. But don’t be fooled. Dairy is not the only option
available. You’re probably well aware of avocado and trail mix, but what
sets these fats apart from fats found in dairy and butter?
Continue reading “Diet Check: Heart Healthy Fats”
Avocado Pasta recipe full of good healthy fats . . .
Continue reading “Recipe: Avocado Pasta”