HR 137 — A Resolution recognizing May 17, 2025, as "World Neurofibromatosis Awareness Day" in Pennsylvania.

PRINTER'S NO.   1067

                    THE GENERAL ASSEMBLY OF PENNSYLVANIA



           HOUSE RESOLUTION
              No. 137
                                               Session of
                                                 2025

     INTRODUCED BY MALAGARI, HILL-EVANS, FREEMAN, VENKAT, GIRAL,
        KHAN, HADDOCK, SANCHEZ, CONKLIN, D. WILLIAMS, GREEN AND
        CURRY, MARCH 19, 2025

     REFERRED TO COMMITTEE ON HEALTH, MARCH 19, 2025


                                A RESOLUTION
 1   Recognizing May 17, 2025, 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
 1   brain, cardiovascular system, bones and skin; and
 2      WHEREAS, The disorder can lead to blindness, deafness, bone
 3   abnormalities, disfigurement, learning disabilities, disabling
 4   pain and cancer; and
 5      WHEREAS, There are three different types of
 6   neurofibromatosis: neurofibromatosis type 1, neurofibromatosis
 7   type 2 and schwannomatosis; and
 8      WHEREAS, Signs of neurofibromatosis type 1 include light
 9   brown spots on the skin, known as café au lait spots, bumps
10   known as Lisch nodules on the iris of the eye and freckles on
11   the groin or armpits; and
12      WHEREAS, Neurofibromatosis type 1 is one of the country's
13   most common genetic disorders occurring in approximately 1 in
14   2,500 births; and
15      WHEREAS, Neurofibromatosis type 2 is far less common,
16   occurring in 1 in 60,000 people, and is typically characterized
17   by tumors that grow on the nerves of the inner ear; and
18      WHEREAS, Schwannomatosis is a rarer form of neurofibromatosis
19   for which symptoms typically appear between ages 25 and 30; and
20      WHEREAS, Schwannomatosis often forms on the spinal or cranial
21   nerves and leads to symptoms like chronic pain or loss of
22   muscle; and
23      WHEREAS, Instances of neurofibromatosis occur due to
24   mutations that either occur during conception or are passed down
25   genetically through the parents; and
26      WHEREAS, Family history, physical exams and genetic tests are
27   currently used to diagnose neurofibromatosis in patients; and
28      WHEREAS, While there is currently no cure available, there
29   are multiple forms of treatment for patients dealing with
30   neurofibromatosis; and

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 1      WHEREAS, Mild instances of neurofibromatosis often do not
 2   require significant treatment outside of regular doctor visits
 3   and observation; and
 4      WHEREAS, More severe cases may require removal through
 5   radiation or surgery done by a nerve tumor specialist or a team
 6   of various surgeons; and
 7      WHEREAS, There are currently no medications that have been
 8   approved to treat neurofibromatosis, though researchers are
 9   investigating various methods and therapies; and
10      WHEREAS, The Children's Tumor Foundation leads efforts to
11   promote and financially sponsor world-class medical research
12   aimed at finding effective treatments and, ultimately, a cure
13   for neurofibromatosis; and
14      WHEREAS, The Children's Tumor Foundation is connecting the
15   unconnected, leading the way through innovative and inventive
16   approaches to scientific advancement and improved patient care,
17   revamping systems to accelerate the path from discovery to
18   treatment; and
19      WHEREAS, The Children's Tumor Foundation provides patient and
20   family support through its information resources, youth programs
21   and community activities; and
22      WHEREAS, Much remains to be done in raising public awareness
23   of neurofibromatosis to help promote early diagnosis, proper
24   management and treatment, prevention of complications and
25   support for research; therefore be it
26      RESOLVED, That the House of Representatives recognize May 17,
27   2025, as "World Neurofibromatosis Awareness Day" in
28   Pennsylvania.




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