Engage in something GREAT

In our daily jobs and routines, how often do we engage ourselves in something of  GREAT importance, something that when all is said and done in a day, a difference will have been made?  This year our March on the Hill can take credit for well over 100 meetings with members of congress advocating for […]

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FDA Approves Kalydeco (VX-770) — First Drug That Targets the Underlying Cause of CF – CFF

  FDA Approves Kalydeco (VX-770) — First Drug That Targets the Underlying Cause of CF – CFF. January 31, 2012 The Cystic Fibrosis Foundation today applauds the Food and Drug Administration’s approval of Kalydeco™ (ivacaftor; previously known as VX-770), a major advance in the search for a cure for cystic fibrosis. The drug was developed […]

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A Voice in Washington!

Time is of the essence! Now is the time for the cutting edge scientific research to be propelled from the lab into the hands of CF patients.  Forward movement of the Vertex drugs and others in the Cystic Fibrosis Foundation pipeline is vital to the tomorrows of CF children and young adults everywhere.  We don’t […]

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March on Washington for CF

“Team work is the fuel that allows common people to accomplish uncommon results.”  This theme resounded throughout the four day weekend in which people nationwide linked only by their children’s illnesses, gathered together to accomplish greatness!  March 17th generated 146 congressional meetings, representing 25 US states telling the story of cystic fibrosis, our struggles to ensure […]

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We Cannot Fail

On Thursday, March 17, two of the founding members of Coaches Cure CF, Chris and Noreen Tarletsky, will head to Washington D.C. with a dozen other CF advocates, to appear on Capitol Hill, speaking on behalf of CF volunteers & The CF Foundation to Congress about their role in the Congressional Cystic Fibrosis Caucus. They […]

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