Lead Singer for The Who and Co-Founder of Teen Cancer America to Join Patients and Advocates for #CuresNow Discussion NEXT WEEK
WASHINGTON, DC – Energy and Commerce Committee Chairman Fred Upton (R-MI) today announced a “Conversation on Child Cures” panel discussion for next Wednesday, March 23, 2016, at 9:30 a.m. in Room 2123 of the Rayburn House Office Building. The “Conversation On Child Cures” will feature patients and advocates, including an 18-year-old young man with cystic fibrosis and parents of children with rare diseases. The conversation will provide a unique opportunity to hear firsthand the perspective of children and teens battling disease. The patient perspective is critical to the overall 21st Century Cures legislative effort to spur safer cures and treatments for patients, especially children and young adults. The panel discussion will be led by Upton and Rep. Diana DeGette (D-CO).
Participants will include:
Sarah Kennedy, mother of Brooke and Brielle Kennedy, sisters battling Spinal Muscular Atrophy (SMA) in Mattawan, Michigan, and the inspiration behind the Cures effort
Walter Whitt, a senior at Bishop O’Connell High School in Arlington, VA, who has cystic fibrosis
Joel Wood, who founded with his wife, Dana, the Foudation to Eradicate Duchenne in 2002. Their son James was diagnosed in May 2000 with Duchenne Muscular Dystrophy.
*Additional participants may be added
“The patient perspective is critical to finding Cures – and too often, the personal story is often lost. 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,” said Upton and DeGette.
For more information about the panel discussion, click HERE.
To learn more about 21st Century Cures, click HERE.