Lukas Daskas found something in the Cystic Fibrosis Foundation's Teen Advocacy Day that he had been searching for his whole life: a sense of community and understanding by others who know what it's like watching a loved one battle cystic fibrosis.
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The U.S. House of Representatives has passed the American Health Care Act (AHCA), legislation that fails to adequately protect people living with cystic fibrosis.
Last month, Senator Chuck Grassley (R-Iowa) and I partnered to create the Cystic Fibrosis Caucus in the U.S. Senate. We are working toward a day when CF stands for “Cured Forever.”
CF Foundation-accredited care centers play an important role in research. They collect information on the health status of their patients with CF who agree to participate, and report that data to the CF Foundation Patient Registry. The information is available in aggregate to the CF community each year through the Data Report, the Highlights Report, and the Care Center Finder.
In the third plenary, Dr. Wayne Morgan talked about the connection between cystic fibrosis care and the Patient Registry, and introduced a new way for people with CF, along with their families, to help shape the research conducted using the Registry.
The package of tax reforms expected to be signed into law includes several provisions that will impact some people with cystic fibrosis.
A day spent visiting a care center proved the perfect introduction to the CF story for legislative staffers.
The event, held at the U.S. Capitol Visitor Center, aimed to educate members of Congress on the impact of the proposed rule to expand short-term insurance plans on people with serious and chronic health conditions.
Dana Handler, an intern with the Foundation's advocacy team, recounts her experience and explains her renewed confidence that we'll find a cure for cystic fibrosis.
A top priority for the next administration and Congress is health care reform. As an adult living with cystic fibrosis, I've been wondering what this will mean for me, our community and our ability to access high-quality, affordable care.