CURTAIN CALL: “Conversation on Child Cures” Rocks the House
WASHINGTON, DC – Energy and Commerce Committee Chairman Fred Upton (R-MI), Ranking Member Frank Pallone, Jr. (D-NJ), and Rep. Diana DeGette (D-CO) today held a panel discussion entitled, “Conversation on Child Cures.” The discussion featured patients and advocates, including an 18-year-old young man with cystic fibrosis and parents of children with rare diseases. Rock legend Roger Daltrey of The Who, co-founder of Teen Cancer America, headlined the conversation and spoke in support of H.R. 6, the 21st Century Cures Act.
Upton kicked off the event by giving an update on recent efforts on the #Path2Cures. Highlighting last week’s meeting with Vice President Biden, Upton said progress is being made. DeGette and Pallone also echoed those sentiments.
Roger Daltrey, speaking on behalf of Teen Cancer America, offered his full support of H.R. 6, saying, “It is so necessary.” Daltrey spoke about how teenagers with cancer have the challenge of finding treatments because they do not fit into the pediatric or adult populations. Daltrey concluded his opening remarks by pleading, “Please get it through.”
Sarah Kennedy, the mother of two young girls battling Spinal Muscular Atrophy (SMA) in Mattawan, Michigan, spoke to some of the challenges her family faces. Highlighting the role she plays as both caretaker and mom, she said their goal upon getting the diagnosis was “to get through each day, and how are we going to make it through this disease.” Through those challenges is how she found the strength and voice to raise awareness about the disease and highlight her inspirational daughters.
Walter Whitt, a high school senior at Bishop O’Connell in Arlington, Virginia, spoke about his battle with cystic fibrosis. Whitt discussed his current treatment, and spoke about his experience when his lung capacity decreased by more than 20 percent in one year, and the relief he felt when he gained some of that capacity back through treatment. Despite some challenging health setbacks, Whitt will graduate high school this spring and is headed to college in the fall.
High School Senior Walter Whitt speaks about his experience
with cystic fibrosis as Sarah Kennedy and Joel Wood look on.
Joel Wood, co-founder of the Foundation to Eradicate Duchenne, spoke about his son, James, who was seated in the front row. James was diagnosed with Duchenne Muscular Dystrophy in 2000. Wood said that when James was first diagnosed, the vast majority of financial resources were going toward paying for treatments and care for patients, not toward research and advocacy. “We desperately need the 21st Century Cures Act to bring up NIH funding, but also all of these things that sound so obscure to so many like surrogate endpoints and biomarkers, and all of the sort of nascent field of patient-driven drug discovery that this act would boost. These are the things that are real, and are desperately needed in our communities.”
For more information about the event, participants, or to watch archived video, click HERE.