2016-03-22-The_Kalamazoo_Gazette
WASHINGTON
Rock legend Roger Daltrey is expected to join U.S. Rep. Fred Upton this week in for a “Conversation on Child Cures” panel discussion in Washington, D.C., officials said.
Daltrey, lead singer of The Who and co-founder of Teen Cancer America, is headlining the event, which is scheduled for 10 a.m. Wednesday at the Rayburn House Office Building, according to a news release issued by the House Energy and Commerce Committee.
Upton, R-St. Joseph, is chairman of the committee and, along with Rep. Diana DeGette, D-Colo., will lead the panel discussion.
The event will feature patients and advocates, including Sarah Kennedy, a Mattawan woman whose two daughters, Brooke and Brielle, are battling spinal muscular atrophy.
Also attending the discussion will be Walter Whitt, a high school senior from Arlington, Virginia, who has cystic fibrosis, and Joel Wood, who founded the Foundation to Eradicate Duchenne in 2002 with his wife, Dana. The couple’s son, James, was diagnosed in 2000 with Duchenne muscular dystrophy.
The discussion “will provide a unique opportunity to hear firsthand the perspective of children and teens battling disease,” officials said.
“The patient perspective is critical to finding cures — and too often, the personal story is often lost,” Upton and DeGette said in a news release.
“We have an incredible panel that will provide a unique glimpse of what children and young adults with disease are facing. Each of our participants has an important story to tell, and we are excited that they agreed to share their uniquely personal experiences.
“Every voice is critical in the effort to deliver cures now.”
The event comes a week after Upton, DeGette and other members of the Energy and Commerce Committee met with Vice President Joe Biden at the White House to discuss the 21st Century Cures legislative effort, which seeks to spur safer cures and treatments for patients, especially children and young adults.
The House passed the bill in July, and a companion bill is being negotiated in the U.S. Senate by Sens. Lamar Alexander, R-Tenn., and Patty Murray, D-Wash.
[Photo Caption] Kennedy
[Photo Caption] Roger Daltrey, left, a member of the rock band The Who, poses with Sarah Sterner, a 17-year-old cancer survivor, at the Ronald Reagan UCLA Medical Center in Los Angeles in 2011. Daltrey and his band raised money to create a separate space for patients ages 15 to 25. (AP files)