Neurofibromatosis Awareness Day

Floor Speech

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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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