HR 462 — A Resolution recognizing May 17, 2026, as "World Neurofibromatosis Awareness Day" in Pennsylvania.

PRINTER'S NO.   3126

                    THE GENERAL ASSEMBLY OF PENNSYLVANIA



           HOUSE RESOLUTION
              No. 462
                                               Session of
                                                 2026

     INTRODUCED BY MALAGARI, HILL-EVANS, VENKAT, GUENST, MAYES, KHAN,
        SANCHEZ, NEILSON, GALLAGHER AND PASHINSKI, MARCH 30, 2026

     REFERRED TO COMMITTEE ON HEALTH, MARCH 31, 2026


                                A RESOLUTION
 1   Recognizing May 17, 2026, as "World Neurofibromatosis Awareness
 2      Day" in Pennsylvania.
 3      WHEREAS, The Children's Tumor Foundation annually observes
 4   May 17 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 (NF1),
 6   neurofibromatosis type 2 (NF2) and schwannomatosis; and
 7      WHEREAS, Signs of NF1 include light brown spots on the skin,
 8   known as café au lait spots, bumps known as Lisch nodules on the
 9   iris of the eye and freckles on the groin or armpits; and
10      WHEREAS, NF1 is one of the country's most common genetic
11   disorders occurring in approximately 1 in 2,500 births; and
12      WHEREAS, NF2 is far less common, occurring in 1 in 60,000
13   people, and is typically characterized by tumors that grow on
14   the nerves of the inner ear; and
15      WHEREAS, Schwannomatosis is a rarer form of neurofibromatosis
16   for which symptoms typically appear between ages 25 and 30; and
17      WHEREAS, Schwannomatosis often forms on the spinal or cranial
18   nerves and leads to symptoms like chronic pain or loss of
19   muscle; and
20      WHEREAS, Instances of neurofibromatosis occur due to
21   mutations that either occur during conception or are passed down
22   genetically through the parents; and
23      WHEREAS, Family history, physical exams and genetic tests are
24   currently used to diagnose neurofibromatosis in patients; and
25      WHEREAS, While there is currently no cure available, there
26   are multiple forms of treatment for patients dealing with
27   neurofibromatosis; and
28      WHEREAS, Mild instances of neurofibromatosis often do not
29   require significant treatment outside of regular doctor visits
30   and observation; and

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 1      WHEREAS, More severe cases may require removal through
 2   radiation or surgery done by a nerve tumor specialist or a team
 3   of various surgeons; and
 4      WHEREAS, In 2025, groundbreaking medications received
 5   approval by the United States Food and Drug Administration to
 6   treat individuals with NF1 and plexiform neurofibromas; and
 7      WHEREAS, The Children's Tumor Foundation leads efforts to
 8   promote and financially sponsor world-class medical research
 9   aimed at finding effective treatments and, ultimately, a cure
10   for neurofibromatosis; and
11      WHEREAS, The Children's Tumor Foundation is connecting the
12   unconnected, leading the way through innovative and inventive
13   approaches to scientific advancement and improved patient care,
14   revamping systems to accelerate the path from discovery to
15   treatment; and
16      WHEREAS, The Children's Tumor Foundation provides patient and
17   family support through its information resources, youth programs
18   and community activities; and
19      WHEREAS, Much remains to be done in raising public awareness
20   of neurofibromatosis to help promote early diagnosis, proper
21   management and treatment, prevention of complications and
22   support for research; therefore be it
23      RESOLVED, That the House of Representatives recognize May 17,
24   2026, as "World Neurofibromatosis Awareness Day" in
25   Pennsylvania.




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