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
1 Recognizing May 17, 2024, as "World Neurofibromatosis Awareness
2 Day" in Pennsylvania.
3 WHEREAS, The Children's Tumor Foundation is observing May 17,
4 2024, as "World Neurofibromatosis Awareness Day" to educate the
5 public about this rare genetic condition; and
6 WHEREAS, The global community recognizes the importance of
7 raising awareness about neurofibromatosis, its impact on
8 individuals and families and the need for continued research and
9 support; and
10 WHEREAS, Although more than 4 million people around the world
11 are living with neurofibromatosis and 1 in every 2,000 births is
12 diagnosed with neurofibromatosis, it is still relatively unknown
13 to the public; and
14 WHEREAS, Neurofibromatosis affects all populations equally,
15 regardless of race, ethnicity or gender; and
16 WHEREAS, Neurofibromatosis causes tumors to grow on nerves
17 throughout the body and also can affect development of the
18 brain, cardiovascular system, bones and skin; and
 1 WHEREAS, The disorder can lead to blindness, deafness, bone
2 abnormalities, disfigurement, learning disabilities, disabling
3 pain and cancer; and
4 WHEREAS, There are three different types of
5 neurofibromatosis: neurofibromatosis type 1, neurofibromatosis
6 type 2 and schwannomatosis; and
7 WHEREAS, Signs of neurofibromatosis type 1 include light
8 brown spots on the skin, known as café au lait spots, bumps
9 known as Lisch nodules on the iris of the eye and freckles on
10 the groin or armpits; and
11 WHEREAS, Neurofibromatosis type 1 is one of the country's
12 most common genetic disorders occurring in approximately 1 in
13 2,500 births; and
14 WHEREAS, Neurofibromatosis type 2 is far less common,
15 occurring in 1 in 60,000 people, and is typically characterized
16 by tumors that grow on the nerves of the inner ear; and
17 WHEREAS, Schwannomatosis is a rarer form of neurofibromatosis
18 for which symptoms typically appear between ages 25 and 30; and
19 WHEREAS, Schwannomatosis often forms on the spinal or cranial
20 nerves and leads to symptoms like chronic pain or loss of
21 muscle; and
22 WHEREAS, Instances of neurofibromatosis occur due to
23 mutations that either occur during conception or are passed down
24 genetically through the parents; and
25 WHEREAS, Family history, physical exams and genetic tests are
26 currently used to diagnose neurofibromatosis in patients; and
27 WHEREAS, While there is currently no cure available, there
28 are multiple forms of treatment for patients dealing with
29 neurofibromatosis; and
30 WHEREAS, Mild instances of neurofibromatosis often do not
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 1 require significant treatment outside of regular doctor visits
2 and observation; and
3 WHEREAS, More severe cases may require removal through
4 radiation or surgery done by a nerve tumor specialist or a team
5 of various surgeons; and
6 WHEREAS, There are currently no medications that have been
7 approved to treat neurofibromatosis, though researchers are
8 investigating various methods and therapies; and
9 WHEREAS, The Children's Tumor Foundation leads efforts to
10 promote and financially sponsor world-class medical research
11 aimed at finding effective treatments and, ultimately, a cure
12 for neurofibromatosis; and
13 WHEREAS, The Children's Tumor Foundation is connecting the
14 unconnected, leading the way through innovative and inventive
15 approaches to scientific advancement and improved patient care,
16 revamping systems to accelerate the path from discovery to
17 treatment; and
18 WHEREAS, The Children's Tumor Foundation provides patient and
19 family support through its information resources, youth programs
20 and community activities; and
21 WHEREAS, Much remains to be done in raising public awareness
22 of neurofibromatosis to help promote early diagnosis, proper
23 management and treatment, prevention of complications and
24 support for research; therefore be it
25 RESOLVED, That the House of Representatives recognize May 17,
26 2024, as "World Neurofibromatosis Awareness Day" in
27 Pennsylvania.
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