[Congressional Record Volume 164, Number 34 (Monday, February 26, 2018)]
[House]
[Pages H1248-H1249]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                     RECOGNIZING GRACE HERSCHELMAN

  (Mr. RODNEY DAVIS of Illinois asked and was given permission to 
address the House for 1 minute and to revise and extend his remarks.)

[[Page H1249]]

  

  Mr. RODNEY DAVIS of Illinois. Mr. Speaker, in honor of Rare Disease 
Day, I am proud to recognize Grace Herschelman, a 6-year-old from 
Hillsboro, Illinois, who continues to be an inspiration for thousands.
  When Grace was 3 years old, she was diagnosed with infantile 
neuraxonal dystrophy, a neurodegenerative disease that results in a 
loss of muscle strength, movement, and the ability to speak. At the 
time of her diagnosis, there were only 10 documented cases of INAD in 
the Nation, and most children with this disease do not make it to their 
10th birthday.
  Throughout her diagnosis and therapy treatment, Grace and her family 
have been a source of inspiration throughout Illinois. They have 
increased awareness for a rare and terminal disease and have raised 
more than $175,000 for research, with donors coming from all 50 States.
  Grace and her family's story is just one example of why I support 
increased funding for the National Institutes of Health and legislation 
like the 21st Century Cures Act. Thousands of Americans are afflicted 
with rare diseases like those that afflict Grace, and we, as a nation, 
must work together to ensure better treatment, cures, and hope that is 
prioritized and possible for these patients and their families.

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