I had the great honor of participating in an informal roundtable in support of H.R. 6, the 21st Century Cures Act in Washington, D.C. on Wednesday, March 23rd, 2016. The meeting was held by Energy and Commerce Committee Chairman Fred Upton (R-MI), Ranking Member Frank Pallone, Jr. (D-NJ), and Rep. Diana DeGette (D-CO) in the Energy and Commerce Committee hearing room.
The conversation provided a unique opportunity to hear first-hand 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 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.
The discussion featured:
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.
Chairman Fred Upton kicked off the event highlighting last week's meeting with Vice President Biden, giving the update on the recent efforts of the #Path2Cures. Upton said Progress is being made. DeGette and Pallone also echoed those sentiments.
I shared our SMA story and some of the challenges our family faces. I am so proud to have found the strength and voice to raise awareness about Spinal Muscular Atrophy and highlight how much of an inspiration Brooke and Brielle are to me.
For a full report, follow this link:
Also check out the Encore for #CuresNow: