WASHINGTON – Sen. Chuck Grassley, as co-founder and co-chair of the new Senate Caucus on Cystic Fibrosis, will welcome advocates at a panel discussion this Thursday. Attending the event will be Iowans who encouraged Grassley to form the caucus: Jaclyn Strube of Waukee and Chaney Kurtz of Clive, who both have children with cystic fibrosis. Also attending will be Melodee Pomerantz, executive director of the Iowa Chapter of the Cystic Fibrosis Foundation.
“The treatments have advanced greatly and help those with cystic fibrosis live longer lives than before,” Grassley said. “The advocacy of the cystic fibrosis community continues to make a big difference in the development of these treatments and the promotion of a good quality of life for patients.”
Grassley and his fellow co-chair, Sen. Edward Markey of Massachusetts, announced the formation of the caucus in 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 Chuck Grassley (R-IA) and Senator Edward Markey (D-MA)
Thursday, June 23, 2016
12 p.m. to 1 p.m.
902 Hart Senate Office Building
Washington, D.C.
Panelists:
· Mara Cray, Young Adult with Cystic Fibrosis
· Erin Baranko, Teen Advocate and CFF Intern
· Joe O’Donnell, Parent of a Child with Cystic Fibrosis
· Preston W. Campbell III, MD, President and CEO of the Cystic Fibrosis Foundation
Join the co-chairs of the new Senate Cystic Fibrosis Caucus, Senators Chuck Grassley (R-IA) and Edward Markey (D-MA), for a discussion featuring young voices in the cystic fibrosis (CF) community. 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. Over 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.
This event takes place during the Cystic Fibrosis Foundation’s annual Teen Advocacy Day, when teens from throughout the country come to Washington to advocate on behalf of their loved ones with the disease.
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