Washington (June 21, 2016) – Sen. Edward J. Markey (D-Mass.), co-chair of the Senate Caucus on Cystic Fibrosis (CF), will welcome advocates at the Caucus’s inaugural panel discussion this Thursday, June 23, 2016 in Washington, DC.  Senator Markey, who co-founded the Congressional Cystic Fibrosis Caucus in the House of Representatives in 2006, is pleased to be joined by Massachusetts teen advocates and their parents, one of which, Joe O’Donnell will be participating as a panelist.
“With increased awareness of this rare disease, and with additional resources, we can help those who battle daily with the realities of living with cystic fibrosis. Breakthrough therapies and innovative care delivery systems can serve as both a model and an inspiration for other rare diseases that afflict countless Americans," said Senator Markey. “The CF community continues to work tirelessly for their cause and we will continue to partner with them as we move forward.”
Senator Markey and his fellow co-chair, Senator Grassley, announced the formation of the caucus this April.
The panel discussion is open to the public and the media.  Details follow:
Presented by the Cystic Fibrosis Foundation
Innovation and Collaboration: How Federal and Private Partnerships Lead to New Treatments for Cystic Fibrosis
An Event in Celebration of the New Senate Cystic Fibrosis Caucus
Honorary Co-Hosts:
Senator Edward Markey (D-Mass.) and Senator Chuck Grassley (R-Iowa)
Thursday, June 23, 2016
12 p.m. to 1 p.m.
902 Hart Senate Office Building
Washington, D.C.
  •  Mara Cray, young adult with cystic fibrosis
  •  Erin Baranko, teen advocate and CFF Intern
  •  Joe O’Donnell, parent of a child with cystic fibrosis, from Massachusetts
  • Preston W. Campbell III, M.D., President and CEO of the Cystic Fibrosis Foundation
Panelists will discuss living with cystic fibrosis, innovative treatments and care, and ways that Congress can help those with CF live longer, healthier lives.
Cystic fibrosis is a rare, genetic disease that causes persistent lung infections and limits the ability to breathe over time. More than 33,000 people in the United States have cystic fibrosis and approximately 1,000 new cases are diagnosed each year. Sixty years ago, people with CF didn’t live long enough to attend elementary school. Today, thanks to advances in treatment and care, people with CF are living into their 30s, 40s, and beyond.