Today we made a trip downtown Charlotte, NC to share our story with U.S. Senator Kay Hagan’s Regional Liaison, Carrie, hoping to get support on The Pediatric Research Network Act (H.R. 6163).
The Pediatric Research Network Act would establish up to 20 pediatric research consortia and support multisite clinical trials for rare diseases like SMA. The meeting went really well and we hope to have the Senator’s support!
Carrie was happy to share with us that Sen. Hagan introduced the Transforming the Regulatory Environment to Accelerate Access to Treatments (T.R.E.A.T) Act. It was signed into law July 9 as part of the Food and Drug Administration Safety and Innovation Act.
This quote was taken from the Fayetteville Observer:
“In North Carolina and across the country, thousands are living with diseases for which there are no adequate treatments - or no treatments at all,” Hagan said in release last week. “The TREAT Act establishes a clear and effective pathway for turning ideas into cures, and cures into life-saving treatments for patients with rare and life-threatening diseases. I am hopeful that the (act) will bring renewed hope to these patients and their families.” (Get the full story here.)
We are so thankful for the time her office took to listen to our story, meet Brooke and Brielle and become educated about Spinal Muscular Atrophy!