[Congressional Record Volume 166, Number 40 (Friday, February 28, 2020)]
[House]
[Page H1291]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




         CONGRESS SHOULD FIGHT FOR AMERICANS WITH RARE DISEASES

  (Mr. DEUTCH asked and was given permission to address the House for 1 
minute and to revise and extend his remarks.)
  Mr. DEUTCH. Madam Speaker, we can't let disputes over dollars and 
cents diminish the hope for more smiles and laughter from sweet 
children like Jordan Ogman.
  This week, I visited 4-year-old Jordan to bring attention to the 
fight to save his life from a rare genetic disorder, TECPR2.
  Jordan's parents, David and Stacey, refused to view his diagnosis as 
a tragedy. They are inspired by his laugh, by his beautiful smile, and 
by his love for his family--especially his sister, Kira. They are ready 
to fight for him.
  The Ogman family is counting on Congress to do what is right. This 
Rare Disease Week, the 30 million Americans living with 1 of over 7,000 
rare diseases are counting on Congress to invest in the research that 
can give them hope.
  Jordan's mom says: ``He is a warrior. He is resilient and bright, and 
we are fighting every minute to save his life.''
  Congress needs to be there to fight alongside the Ogman family and 
every American family battling a rare disease.
  Jordan, you keep fighting.
  My colleagues, let's join this fight together.

                          ____________________