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Pennsylvania State Senate
https://www.legis.state.pa.us/cfdocs/Legis/CSM/showMemoPublic.cfm?chamber=S&SPick=20170&cosponId=25598
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Senate of Pennsylvania
Session of 2017 - 2018 Regular Session

MEMORANDUM

Posted: April 5, 2018 03:37 PM
From: Senator Wayne Langerholc, Jr.
To: All Senate members
Subject: Recognizing May 2018 as ‚ÄúNeurofibromatosis Awareness Month‚ÄĚ
 
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.

About 50% of people with NF1 also have learning challenges. Softening and curving of bones, and curvature of the spine (scoliosis) may occur in some patients. Occasionally, tumors may develop in the brain, on cranial nerves or on the spinal cord. While NF tumors are generally not cancerous, they may cause health problems by pressing on nearby body tissue. Sometimes a benign tumor may become malignant, but most people with NF1 will never develop a malignant tumor. NF1 is usually diagnosed in childhood.

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 2018 as Neurofibromatosis Awareness Month in Pennsylvania.



Introduced as SR365