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Students at Dundee University are developing a device to help rapid detection and quantification (via green fluorescence) of sputum bacteria such as Pseudomonas aeruginosa or Burkholderia cenocepacia. During a competition (iGEM), they came up with the idea of the "Lung Ranger", made up of the...
Hi all, here is a list of items I came across this week in the media on CF. I covered some of this in more detail in this weeks Newsletter which you either will received in your inbox or can access via our facebook page: https://www.facebook.com/knowcf
A lot of these news items link to our...
Hi TreasureGoddess - Thank you so much for sharing! This was indeed amazing. I have shared it on our facebook: https://www.facebook.com/knowcf/posts/10152842078838777
Morgan Grindstaff also has a great blog here! CFers are so talented! http://cystikone.wordpress.com/
- Chris
A recent Lancet review by leading expert Professor Stuart Elborn just came out on the growing concern of antibacterial resistance in cystic fibrosis. He said that more funding and further research are required into antibiotic resistance in order to improve patient outcomes for people with cystic...
If the stock price is any indication, it looks quite likely that Vertex will release some very positive result at the North American Cystic Fibrosis Conference in 2 weeks time on the trials that address the treatment of CFers with double F508del mutation. When Vertex announced top-line...
Hi Aboveallislove, The idea it to breakdown (melt) the biofilms first and then apply the antibiotics. Biofilms are used by bacteria to field themselves against antibiotics and the human immune system defenses.
Hi Mallika, thank you for the update! Appreciated! 2017 sounds right. I guess then...
A New Zealand company is developing a new drug called Citramel, which is claimed to target the biofilms bacteria use to build-up resistance to antibiotics. It just received approved by New Zealand regulators for its use in a clinical study which will start soon pending funding. Citramel is...
It’s uncharted territory! A nice article out yesterday reviewing advances in CF coordinated care, new challenges and new targeted therapies. Some very important points are made! The burden of disease (TIME to treat CF) that CFers and their caregivers have to go through to keep as healthily...
Hi Aboveallislove, I did not get into the specifics. I references the sturdy and CDC if you would like to look into it further. I think this is a great topic to bring up with you physician though and reference this study as its very new and many physicians may not be aware of it yet. I saw the...
Hi Aboveallislove, this particular studies objectives were:
So they looked specifically at the naval version and they have mentioned it's has increased efficiency over the shot. I can imagine that in children, a shot may not be a welcomed sight and a nasal spray maybe more efficient in its...
Hi mommof2b1, thats amazing. Its great you finally got diagnosed. You can find plenty of support in our forums and hopefully our facebook and newsletters can also be a source of education for you.
- Chris
As we approach flu season in the Northern hemisphere, here is a study just out where researchers have concluded that Live Attenuated Influenza Vaccine [LAIV] (The Nasal Spray Flu Vaccine) is well tolerated among children with cystic fibrosis. They said: "Given the clinically severe impact of...
Hi Mallika, its not an antibiotic. Has multiple modes of action although the terminology used on the website is a little vague....but nevertheless very informative.
Taken directly from http://www.novabiotics.co.uk/pipeline/nm001lynovex
- Chris
Gene Therapy for Cystic Fibrosis is advancing and we hope to hear some positive results next month from the UK CF Gene Therapy Consortium at the NACF conference. Results will be about the multi-dose trial that is currently going on in the UK via a liposome-based delivery vector and will...
There are a ton of fiber supplements selling online. Most are good. Fiber is Fiber...can't go wrong. Just look at what else they put in there. Shop at a bodybuilding store...they are usually pretty savvy about their supplements. With a supplement, you can more easily adjust your fiber intake. If...
As I mentioned above, I do not think it can hurt to try and experiment with varying amounts of fiber in your meals. More fibre can have a positive effect on food absorption and enzyme efficiency. I think very little if any literature can be found on this topic for CF, but its common amongst...
Hi Everyone!
Apologies for not updating you on week 37 news. It has been such a busy last 2 weeks for me and Jeanne (imogene). I traveled to the US last week to present with Jeanne at the ePatient connections conference. The presentation went extremely well and the days that followed were none...
Twenty-five years ago this month, the CFTR gene was discovered.
Here are some facts:
- The CFTR defect is really a very subtle defect and much easier to study then most.
- CF is caused by a defect in a single gene, affecting the CFTR protein.
- The CFTR protein helps to regulate chloride...
A new drug called "Lynovex" just got approved by FDA that has unique multi-functional, combined properties of breaking down the excessive mucus produced in the airways. The new drug allows for destruction of the bacteria responsible for the recurrent respiratory infections in CF by...
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