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SOUNDCHECK: Conversation on Child Cures Set for TOMORROW


03.22.16

NEW TIME: #CuresNow Discussion to Commence @ 9:30 a.m.


The stage is set, and the voices are ready. On Wednesday morning, Energy and Commerce Committee Chairman Fred Upton (R-MI) and Rep. Diana DeGette (D-CO) will lead a “Conversation on Child Cures” headlined by The Who frontman and co-founder of Teen Cancer America, Roger Daltrey. Joining Daltrey will be patients and advocates on behalf of #EndDuchenne, #FightSMA, and #CysticFibrosis. The discussion will kick off at 9:30 a.m. in Room 2123 of the Rayburn House Office Building. Click HERE for more information on the event and the participants, and click HERE to access live video of the event Wednesday.

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The Who’s Roger Daltrey to headline ‘Conversation on Child Cures’

March 21, 2016

WASHINGTON, D.C. – 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 in the Capitol, according to a news release issued by the House’s Energy and Commerce Committee.

Upton, R-St. Joseph, is chairman of the Energy and Commerce Committee and will lead the panel discussion along with Rep. Diana DeGette, D-Colo.

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 panel discussion will be Walter Whitt, a high school senior from Arlington, Va., 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.

Officials said Wednesday’s panel discussion “will provide a unique opportunity to hear firsthand the perspective of children and teens battling disease.”

“The patient perspective is critical to finding Cures – and too often, the personal story is often lost,” Upton and DeGette said in a the 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 just 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 is seeking 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 currently being negotiated in the U.S. Senate by Sens. Lamar Alexander, R-Tenn., and Patty Murray, D-Wash.

Read the article online here.

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