PRINTER'S NO. 3099
THE GENERAL ASSEMBLY OF PENNSYLVANIA
HOUSE RESOLUTION
No.
433
Session of
2024
INTRODUCED BY MALAGARI, CONKLIN, SANCHEZ, HILL-EVANS, ROZZI,
NEILSON AND KINSEY, MAY 14, 2024
REFERRED TO COMMITTEE ON HEALTH, MAY 14, 2024
A RESOLUTION
Recognizing May 17, 2024, as "World Neurofibromatosis Awareness
Day" in Pennsylvania.
WHEREAS, The Children's Tumor Foundation is observing May 17,
2024, as "World Neurofibromatosis Awareness Day" to educate the
public about this rare genetic condition; and
WHEREAS, The global community recognizes the importance of
raising awareness about neurofibromatosis, its impact on
individuals and families and the need for continued research and
support; and
WHEREAS, Although more than 4 million people around the world
are living with neurofibromatosis and 1 in every 2,000 births is
diagnosed with neurofibromatosis, it is still relatively unknown
to the public; and
WHEREAS, Neurofibromatosis affects all populations equally,
regardless of race, ethnicity or gender; and
WHEREAS, Neurofibromatosis causes tumors to grow on nerves
throughout the body and also can affect development of the
brain, cardiovascular system, bones and skin; and
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WHEREAS, The disorder can lead to blindness, deafness, bone
abnormalities, disfigurement, learning disabilities, disabling
pain and cancer; and
WHEREAS, There are three different types of
neurofibromatosis: neurofibromatosis type 1, neurofibromatosis
type 2 and schwannomatosis; and
WHEREAS, Signs of neurofibromatosis type 1 include light
brown spots on the skin, known as café au lait spots, bumps
known as Lisch nodules on the iris of the eye and freckles on
the groin or armpits; and
WHEREAS, Neurofibromatosis type 1 is one of the country's
most common genetic disorders occurring in approximately 1 in
2,500 births; and
WHEREAS, Neurofibromatosis type 2 is far less common,
occurring in 1 in 60,000 people, and is typically characterized
by tumors that grow on the nerves of the inner ear; and
WHEREAS, Schwannomatosis is a rarer form of neurofibromatosis
for which symptoms typically appear between ages 25 and 30; and
WHEREAS, Schwannomatosis often forms on the spinal or cranial
nerves and leads to symptoms like chronic pain or loss of
muscle; and
WHEREAS, Instances of neurofibromatosis occur due to
mutations that either occur during conception or are passed down
genetically through the parents; and
WHEREAS, Family history, physical exams and genetic tests are
currently used to diagnose neurofibromatosis in patients; and
WHEREAS, While there is currently no cure available, there
are multiple forms of treatment for patients dealing with
neurofibromatosis; and
WHEREAS, Mild instances of neurofibromatosis often do not
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require significant treatment outside of regular doctor visits
and observation; and
WHEREAS, More severe cases may require removal through
radiation or surgery done by a nerve tumor specialist or a team
of various surgeons; and
WHEREAS, There are currently no medications that have been
approved to treat neurofibromatosis, though researchers are
investigating various methods and therapies; and
WHEREAS, 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 neurofibromatosis; and
WHEREAS, The Children's Tumor Foundation is connecting the
unconnected, leading the way through innovative and inventive
approaches to scientific advancement and improved patient care,
revamping systems to accelerate the path from discovery to
treatment; and
WHEREAS, The Children's Tumor Foundation provides patient and
family support through its information resources, youth programs
and community activities; and
WHEREAS, Much remains to be done in raising public awareness
of neurofibromatosis to help promote early diagnosis, proper
management and treatment, prevention of complications and
support for research; therefore be it
RESOLVED, That the House of Representatives recognize May 17,
2024, as "World Neurofibromatosis Awareness Day" in
Pennsylvania.
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