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You should try to play around with fiber content of each meal. High fiber allows longer digestion (food passes through you slower) and low fiber allows for faster digestion (food passes through you faster). By regulating fiber in your meals you are able to regulate the digestion efficiency. Only...
It is so crucial that insurers cover drugs like Kalydeco and here is another milestone for the Kalydeco drug and the CF community. We must educate the payers of healthcare and make them understand that even though Kalydeco costs are high, they offset an enormous treatment cost burden for them as...
Hi Tim, have started to read your book...got through a good first chunk on my flight to the US. LOVE IT!! Its so inspirational. So much to be learned from your experiences. Can't wait to get on the plane back to EU and read some more...The trip to US and presentation at ePatient connections went...
ProQR IPO is this week. Their leading product is QR-010 which aims to restore the defect in CFTR protein caused by the del F508 mutation. Specifically, administration into the lungs of a chemically modified oligoribonucleotide that is capable of restoring the RNA sequence coding for CFTR...
THANK YOU! We gave an amazing presentation this morning at the ExL ePatient Connections Conference in Philadelphia and we have this wonderful CF community to thank for driving and motivating us to present. We presented a topic on "participatory healthcare" and why industry should care about...
Exercise is key and often overlooked as a treatment method for CF. Michael Burke, 44, is a lifelong battler with cystic fibrosis. He says: “From my sixth birthday to my 16th birthday, I thought way too much about dying. It was wasteful worrying. Here I am in my 40s, and I’ve run marathons...
The first baby has been born in Ireland where a technique called Pre-Implantation Genetic Diagnosis (PGD), was applied to screen embryos from the mother for suspected genetic conditions such as cystic fibrosis. After screening, the identified healthy embryo is then implanted back into the...
agree. CF needs to be more prominent on their radars. In all countries where CF has prevalence. This is not the case at all currently in many countries.
A 76-YEAR-old woman diagnosed with cystic fibrosis, has become the oldest ever first presentation case in Ireland. US and UK registry data reveal the oldest patients with CF in these countries are 82 and 79 years respectively. An increasing number of Adults are being diagnosed later in life due...
Hi All, found this press release that has some good information: http://www.theguardian.com/world/2014/sep/08/children-respiratory-virus-illinois-missouri
Basically:
I guess all you can do at this stage is try to be vigilent and keep your children away from affected/danger areas if known...
ProQR Therapeutics, a Dutch biotech developing mRNA treatments for CF, announced its IPO terms today. They have developed a technique that targets and repairs defective messenger RNA (mRNA) and treats the underlying genetic mutation for CF, which they believe is superior to small molecules...
Vertex will be presenting some important data at the upcoming NACFC conference in early October. Combination trials (Kalydeco + lumacaftor) in people with CF who are homozygous for F508del-CFTR. Presentations are expected to include previously announced data as well as new interim data from...
Umbilical cord is simply a very good source of good quality stem cells. If these are not available, its still possible to use stem cells from bone marrow (and other sources), but there are increased challenges and risks involved as they are harder to differentiate into cells like lung epithelial...
Some Cystic Fibrosis related highlights in the news this week:
FDA Grants Fast Track Designation to Aradigm’s Pulmaquin for Non-Cystic Fibrosis Bronchiectasis http://t.co/HZHT0cgu6s
Scientists aim to develop rapid test system for immune dysfunction to treat cystic fibrosis...
Please help Tim Wotton win the People's Book Prize. His incredible CF memoir ‘How have I cheated death?’ - A story of triumph over adversity, this compelling chronicle, the first book written by a CF sufferer at 40, offers hope and inspiration, demonstrating what cannot be cured needs to be...
This particular study is localized to small intestine. They used small intestine because of the abundance of stem cells. So its a great place to provide proof of concept for this technique. However, This technique can be applied to many other organs and in time potentially the whole body (but...
Promising results from a gene therapy study late last year by Hans Clevers, a Dutch stem cell researcher, showed that a technique called CRISPR can be used to correct the CFTR gene defect associated with cystic fibrosis in human stem cells. Using cultured intestinal stem cells, they were...
A BREAKTHROUGH has allowed scientist to discover that adults with Cystic Fibrosis may lack a very important cell surface molecule that is crucial for proper immune system defense. The scientists found that the immunological cell surface molecule HLA-DQ is reduced or absent in many people...
There is a piece in this article on CFTR function relating to lung disease and how pigs could help shed light on this question: http://www.sciencedaily.com/releases/2011/03/110316152947.htm
-chris
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