[Congressional Record Volume 166, Number 91 (Thursday, May 14, 2020)]
[Senate]
[Page S2449]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                    NEUROFIBROMATOSIS AWARENESS DAY

  Mr. KENNEDY. Mr. President, the Children's Tumor Foundation is 
observing May 17, 2020, as neurofibromatosis--NF--Awareness Day to 
educate the public about this rare genetic disorder that impacts more 
than 2 million people around the world. It is estimated that 1 in every 
3,000 births is diagnosed with NF; yet it is still is relatively 
unknown to the public.
  NF affects all populations equally, regardless of race, ethnicity, or 
gender. The disorder causes tumors to grow on nerves throughout the 
body and can also affect development of the brain, cardiovascular 
system, bones, and skin. Further, the disorder can lead to blindness, 
deafness, bone abnormalities, disfigurement, learning disabilities, 
disabling pain, and cancer.
  The Children's Tumor Foundation leads efforts to promote and 
financially sponsor world-class medical research aimed at finding 
effective treatments and, ultimately, a cure for NF. They do this by 
actively fostering collaborative partnerships in both science and 
industry to speed the drug research and development process through a 
number of consortia.
  In kind, the Children's Tumor Foundation is working around the clock 
to improve access to quality patient healthcare through its national NF 
clinic network. It provides patient and family support through its 
information resources, youth programs, and local chapter activities.
  Much remains to be done in raising public awareness of NF to help 
promote early diagnosis, proper management and treatment, prevention of 
complications, and support for research.
  NF affects children all across the world; and in recognition of this 
important initiative and the tireless research taking place, I support 
recognizing May 17, 2020 as Neurofibromatosis Awareness Day.

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