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”
It’s that time of year again… flu shots.
The Federal Government will this year fund a vaccine that covers four, rather than the usual three, strains of influenza (the quadrivalent). Getting a Flu Shot early in the year, between March and May, before the height of the flu season can result in a drastically reduced risk of becoming infected and spreading the virus to others.
It’s a good idea for all CF children (and their families, care givers, nannies etc) to get a flu shot. At risk groups can get a free jab as part of the government vaccination program and this is generally available through your hospital or your GP.
Either way, now’s a good time to start thinking about yours.
Penny has taken some notes on the following topics:
- Transitioning with success
- Sexual health for adolescents with CF
- Transplants : The Work Up / What’s required
- Energy expenditure, hydration and nutrition in the active person with CF
You can download these here 11th Australasian CF conference 2015
Likewise I’ve taken pics of some of the key slides from the following presentations so feel free to download and have a read (more to follow):
I’ll post the remaining sessions as soon as I get a chance
Last week the annual CFRI conference was held in Redwood City California. For those of you who are not familiar with CFRI, it’s a terrific organisation that funds cystic fibrosis research, provides educational and personal support, and spreads awareness of cystic fibrosis.
Their website hosts a bunch of terrific content from research paper, presentations and key learnings to events and links with other key CF networks. It’s well worth your while getting on there and having a look. They also held a pediatric conference earlier in the year which had some incredible content specifically related to pediatrics. Do yourself a favour and get onto that content when you have a moment, its positive, uplifting but really informative. You can find that here
I travelled to the most recent conference last week which was fantastic. About 200 people went, a combination of speakers that included CF doctors and program directors, a physiotherapist, a social worker, an infection control expert and CF nurse / clinic co-ordinator who has devoted her life to CF; plus about 150 CF parents.
I took a heap of notes so that I could share the content with you all. You can download my notes here.
Please keep in mind that there was a mountain of info so I’ve done my best to try and record / remember as much as I could in each session but there may be some things missing. There’s a bit more to put down on paper but this is the majority of the sessions as I remember them.
If you have any questions please give me a shout at firstname.lastname@example.org
An inspirational video of the rugby player who got to the top and played with the best. He also happens to have cystic fibrosis.
Getting Nosey about CF is a very informative short film made by the Cystic Fibrosis Trust UK to help children understand their CF and to explain to siblings and other children what CF is.