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Kaylinsmom, there are about 1700 mutations that cause CF. I know the test my son had only checked for about 100 or so genes. Most are not tested for, I would check with Johns Hopkins as they say their test ID's 98% of the mutations (I am not sure how many mutations that represents). You might...

I did a search on pubmed and while I couldn't find anything that specifically said what class R560T is in, sadly it looks like you are correct R560T and d508f have similar impacts on the formation of the CFTR protein (I hope I am phrasing this correctly). However, the new combo drug may help...

I thought in one of your other notes you said your son was 3.. but I may be mistaken.. per kalydeco.com, KALYDECO is prescribed in patients age 2 years and older

I don't know if this is helpful but I was curious so did a search on this syndrome. I found this site, its in Europe, but it lists to clinic trials you might want to keep track of - www.orpha.net/consor/cgi-bin/OC_Exp.php?lng=EN&Expert=662 Good luck

I just posted this on another thread (sorry if you read it already) - Several studies indicate that S1235R is "not associated with typical CF but is associated with pancreatitis" (1). (1) http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4102440/Several studies indicate that S1235R is "not associated...

Several studies indicate that S1235R is "not associated with typical CF but is associated with pancreatitis" (1). (1) http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4102440/

Jenny, Can you provide more info on the co-assistance programs? We do get co-pay help with Kalydeco from the pharmaceutical company, but that's the only help we have get outside of my (private) insurance. The state agencies I contacted, and the CF social worker told me my son didn't qualify...

The CF centers appear to be good BUT Texas is among one of the highest uninsured rates in the country. If you plan to move here make sure that your job has insurance. Texas is one of the states that refused to expand their Medicaid program, and their rules regarding who can get coverage as...

Catastrophic health insurance comment and weblink You might try this http://www.azahcccs.gov/Commercial/CRS.aspx; its the state children's rehab program, but read carefully as in another page it says its linked to both disease and family income level. Texas offers (offered?) a similar program...

The piece from the street wasn't real informative it was just waving a red flag. However, but a piece at fiercebiotech contains more details EG per Porges, Kalydeco shifts the temperature stability downward which counteracts the positive effect of Vx809 and the longer the exposure to Kalydeco...

Maybe its related to a clip from an article that I just read - based on discussions with researchers/doctors at the CF Society Conference in Sweden, analyst Geoff Porges has concluded that two pivotal phase III studies (TRAFFIC and TRANSPORT) for Kalydeco + VX809 is (more) likely to fail. The...

Janelle, my son hasn't taken this drug but I have researched it as he has osteopenia of the spine so he might need it in the future. The reason he is still in pain may be due to the long exertion time for the drug which could be up as long as 120 hours if I am interpreting the info below...

Megan, you might check into online tutoring EG tutor(period)com; sylvan, etutor(period)org.. I don't know exactly what they need in terms of educational levels etc. If your writing/grammar is pretty good you might check into online editing.. I've not worked for places like this but have seen...

One thing to think about, the top rated centers are often located in large cities and but some of them have pollution problems due to car exhausts and so on. For example, Dallas Children's is a great clinic but like much of Texas, Dallas's air quality, during the summer, can be pretty bad. We...

You might want to take a look at this webpage.. http://www.socialsecurity.gov/ssi/spotlights/spot-trusts.htm Good luck.