WASHINGTON DC – Today, Senators Edward J. Markey (D-Mass.) and Chuck Grassley (R-Iowa) launched the Senate Cystic Fibrosis (CF) Caucus.
Approximately 30,000 children and adults in the United States have cystic fibrosis, a life-threatening genetic lung disease for which there is no cure. More than 820 people are affected by this horrible disease in Massachusetts and 406 in Iowa.
Significant improvements have been made in the treatment of cystic fibrosis. More than 50 years ago, many children with CF did not live past five years old, but today, many live with CF into their 40s and beyond.
Much of this achievement is due to the hard work and dedication of patients, families and advocates, including the Cystic Fibrosis Foundation.
The Caucus will have its inaugural event on Thursday, June 23, when both senators will host a discussion with teen advocates.
“The formation of this caucus is intended to highlight the importance of beating this dreadful, cruel disease and pledging to all those with cystic fibrosis and their loved ones that Congress is dedicated to supporting you,” said Senator Markey, who co-founded the Congressional Cystic Fibrosis Caucus in the House of Representatives in 2006. “Our hope for this caucus is to make CF stand for ‘Cured Forever’. We need to provide patients with hope for a better future and we can do that by making greater investments in research, providing resources for treatment and showing our unwavering commitment to the people with CF, their families and caretakers. I thank Chairman Grassley for his partnership in founding the Senate caucus, and I look forward to working together on a bipartisan basis to help families gain more control over this disease.”
“The advocacy of the cystic fibrosis community is impressive, and it’s gained results,” said Senator Grassley, who agreed to co-found and co-chair the caucus after hearing from Drew and Jaclyn Strube of Waukee, Iowa, who advocate for their 21-month-old son, Major, and Chaney Kurtz of Clive, Iowa, who advocates for her 12-year-old daughter, McKayla. “These families are passionate about helping their children live past the predicted 40-year life expectancy. Their children fight an everyday battle to live healthy, regular lives. The Senate caucus is meant to add to advocacy efforts in promoting awareness, research and policies toward a good quality of life and a cure.”
“Senator Markey and Senator Grassley are ardent champions of the cystic fibrosis community, and we are deeply grateful for this bipartisan show of support for people who live everyday with this serious, life-threatening disease,” said Preston W. Campbell, III, MD, President and CEO of the Cystic Fibrosis Foundation. “We at the Cystic Fibrosis Foundation look forward to continuing our close collaboration with the senators as they explore ways to improve the lives of people with CF.”