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https://www.legis.state.pa.us/cfdocs/Legis/CSM/showMemoPublic.cfm?chamber=S&SPick=20190&cosponId=29319
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Senate of Pennsylvania
Session of 2019 - 2020 Regular Session

MEMORANDUM

Posted: April 22, 2019 12:57 PM
From: Senator Wayne Langerholc, Jr.
To: All Senate members
Subject: Recognizing May 2019 as “Neurofibromatosis Awareness Month”
 
In the near future, I plan on introducing a resolution which will designate May as Neurofibromatosis Awareness Month in Pennsylvania.

Neurofibromatosis, also known as NF, is a genetic disorder that affects 1 in every 3,000 people. There are three types of NF: NF1, NF2, and schwannomatosis. Neurofibromatosis type 1 (NF1), formerly known as von Recklinghausen NF or Peripheral NF, is the most common of the three, and is also one of the most common inherited neurological disorders, affecting about 1 in 3,000 people throughout the world. The disorder is characterized by multiple café au lait (light brown) skin spots and neurofibromas (small benign growths) on or under the skin, and/or freckling in the armpits or groin.

Additional Facts:
  • NF can lead to blindness, bone abnormalities, cancer, deafness, disfigurement, learning disabilities and disabling pain.
  • NF affects all populations regardless of ethnicity or gender.
  • Roughly half of all cases arise in families with no history of the disorder.
  • NF is more prevalent than cystic fibrosis, Duchenne muscular dystrophy and Huntington’s disease combined.
  • NF research is shedding new light on several forms of cancer, brain tumors, bone abnormalities and learning disabilities, ultimately benefiting the broader community in addition to those with NF.
  • Progress toward ending NF is being made every day. Because of Children’s Tumor Foundation funding, there are dozens of on-going NF-specific clinical trials in existence, and 50 NF Clinics nationwide.
Thank you for your consideration, and I ask that you please join me in co-sponsoring this important resolution and designating the month of May 2019 as Neurofibromatosis Awareness Month in Pennsylvania.



Introduced as SR123