Originally posted in Cystic Fibrosis News From Medical News Today

Testing for genetic mutations beyond those medically recommended is unlikely to prevent the birth of children with classic cystic fibrosis and may detect mutations causing only mild disease, according to a study published online in Genetics in Medicine, the official publication of the American College of Medical Genetics (ACMG)…

Advances being made in CF research have the potential to make dreams come true for people with CF that were impossible just decades ago.

The CF Foundation asked some of the many extraordinary people affected by this disease, including Members of Congress and volunteers like you, to share their dreams for the future:

One of the most important reasons Members of Congress join our fight is that they?ve heard from someone touched by CF.

Join the hundreds of Advocates who speak out for CF by becoming a part of Make Every Breath Count — the CF Foundation?s national advocacy program that helps volunteers like you meet with their Members of Congress.

Speak out, get involved, and inspire action today by signing up for Make Every Breath Count!

Just like you, Senator James Inhofe (R-OK) was inspired to take action:

?Because I have a staffer with cystic fibrosis, the challenges faced by patients with CF hit particularly close to home. As a continued supporter for medical advancements in CF, I urge patients, their families, and friends to contact their state lawmakers to ensure your voice is heard in Congress. Together, we can make a dramatic difference in the lives of those affected by this debilitating disease and make CF a thing of the past.?

Make sure your lawmakers support our fight against CF by funding innovative CF research and quickly and safely moving promising new therapies into the hands of patients. If you don?t inspire them to act, who will?

Sign up for Make Every Breath Count!

Coming Soon: New Advocacy Website

Soon, it will be easier than ever to communicate with your elected officials about issues important to people with CF. The Cystic Fibrosis Foundation will unveil a new advocacy website later this month which will provide you with:

• Faster, less complicated access to the contact information for your Members of Congress
• The ability to easily track all of your communications with elected officials
• A new tool to share your CF story with your elected officials
• A reference guide showing where your elected officials stand on issues affecting people with CF

Thank you! Together, we are making a difference for people with CF.

Sincerely,

Cystic Fibrosis Foundation
800-FIGHT-CF
info@cff.org
www.cff.org

Originally posted in Cystic Fibrosis News From Medical News Today

In a study published in this week’s New England Journal of Medicine, treatment with a new drug candidate known as VX-770 resulted in improvements in lung function and markers of disease in a Phase 2 clinical trial of 39 people with cystic fibrosis (CF). There were no discontinuations due to adverse events in the study, and the frequency of adverse events was similar across the study groups…

Originally posted in Cystic Fibrosis News From Medical News Today

An investigational drug targeting a defective protein that causes cystic fibrosis has been shown to improve lung function in a small study of CF patients, according to findings published Nov. 18, 2010, in the New England Journal of Medicine. The investigational drug, VX-770, appeared to improve function of what is known as CFTR–the faulty protein responsible for CF…

Originally posted in Cystic Fibrosis News From Medical News Today

Children with chronic health conditions such as cystic fibrosis, type 1 diabetes, sickle cell diseases and cerebral palsy represent less than two percent of the population but can consume more than 50 percent of resources at children’s hospitals throughout the country…

Originally posted in Cystic Fibrosis News From Medical News Today

PTC Therapeutics, Inc. announced the publication of data from a Phase 2a clinical trial of ataluren in children with nonsense mutation cystic fibrosis (nmCF) in the American Journal of Respiratory and Critical Care Medicine…

Originally posted in Cystic Fibrosis News From Medical News Today

An imbalance of salt and water in patients with cystic fibrosis makes their lungs clog up with sticky mucus that is prone to infection. The cause of the offending imbalance is a well-known genetic error, one that blocks the molecular expressway for tiny chloride ions to move across the surface of the lungs…

Originally posted in Cystic Fibrosis News From Medical News Today

A new study using a pig model of cystic fibrosis (CF) suggests that low levels of a growth promoting hormone at or before birth may contribute to growth defects in patients with CF. The study, led by University of Iowa researchers and published online the week of Nov…

Originally posted in Cystic Fibrosis News From Medical News Today

The Cystic Fibrosis Foundation announced that it will partner with CVS/pharmacy and Warner Home Video for the second year to raise critical funds for cystic fibrosis through the sale of classic family movies this holiday season. From now through Dec…