[Congressional Record Volume 161, Number 107 (Friday, July 10, 2015)]
[House]
[Page H5034]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                     21ST CENTURY CURES INITIATIVE

  (Mr. COSTELLO of Pennsylvania asked and was given permission to 
address the House for 1 minute and to revise and extend his remarks.)
  Mr. COSTELLO of Pennsylvania. Madam Speaker, the 21st Century Cures 
initiative has a lot of positive measures to help medical innovation 
reach its full potential. I would like to focus on just one of the many 
reasons to support this legislation.
  I had the pleasure of meeting with the family of Garrett Coyne, 
staunch advocates for cures for rare diseases. Garrett is a 5-year-old 
resident of Gilbertsville, who 10 months ago was diagnosed with a rare 
neurodegenerative disorder often called Batten disease. Garrett was 
born and developed normally, but since September the disease has left 
him legally blind and has greatly weakened his physical and mental 
abilities. Unfortunately, Batten disease presently has no treatment, no 
cure, and is not preventable.
  While the road ahead for Garrett and his family is daunting, there is 
hope. It is because of provisions in the 21st Century bill that 
researchers will have the tools to work toward developing medical 
advancement for Batten disease.
  By modernizing medical innovation and increasing NIH funding, a more 
promising future for patients, families, and innovators is in front of 
us. I am supporting the 21st Century Cures bill for many reasons, but 
the main one is this effort to help children, like 5-year-old Garrett 
and other constituents in my district who are challenged daily with the 
struggles of a rare disease. I encourage my colleagues to join me.

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