PRINTER'S NO. 744
THE GENERAL ASSEMBLY OF PENNSYLVANIA
SENATE RESOLUTION
No.
123
Session of
2019
INTRODUCED BY LANGERHOLC, BARTOLOTTA, STEFANO, BROWNE, VOGEL,
PHILLIPS-HILL, MARTIN, J. WARD, KILLION, SCAVELLO, FOLMER,
DINNIMAN, TARTAGLIONE, FONTANA, BREWSTER, KEARNEY, SCHWANK,
HUGHES AND COSTA, MAY 8, 2019
INTRODUCED AND ADOPTED, MAY 8, 2019
A RESOLUTION
Designating the month of May 2019 as "Neurofibromatosis
Awareness Month" in Pennsylvania.
WHEREAS, Neurofibromatosis (NF) is a genetically determined
neurological disorder having familial or sporadic origin; and
WHEREAS, NF carries a risk of highly variable physical,
mental and quality-of-life complications; and
WHEREAS, Specific complications may have a minimal, disabling
or fatal effect; and
WHEREAS, NF affects an estimated 100,000 people nationwide;
and
WHEREAS, Abnormalities of the brain, spinal cord, nerves and
skin increase the incidence of benign or malignant tumor growth;
and
WHEREAS, Orthopedic manifestations affect postural control,
bone formation and bone density; and
WHEREAS, Children with NF have higher rates of intellectual
and learning disabilities than other children; and
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WHEREAS, NF represents three genetically distinct disorders;
and
WHEREAS, Type 1 (NF1), classified as a tumor predisposition
syndrome, is a progressive disorder usually diagnosed in
childhood; and
WHEREAS, Diagnosis is based on physical findings relating to
a child's skin, eyes, bones and brain; and
WHEREAS, The presence of internal and external tumors and
areas of abnormal skin color characterize NF1; and
WHEREAS, Combination drugs may moderate NF1-linked drug
resistance mechanisms; and
WHEREAS, Type 2 (NF2) causes peripheral neuropathy and
deteriorating balance and hearing; and
WHEREAS, Slow-growing tumors on cranial nerves distinguish
NF2; and
WHEREAS, Early onset of NF2 symptoms has an adverse effect on
long-term survival; and
WHEREAS, Schwannomatosis (SWN), the third type, has two known
causative genes which give rise to benign tumors; and
WHEREAS, SWN induces intense neuropathic pain, numbness and
weakness; and
WHEREAS, No targeted therapies reverse NF expression; and
WHEREAS, Primary care providers, genetic counselors, physical
therapists, radiation therapists and behavioral therapists
contribute to patient-centered care teams; and
WHEREAS, NF treatment plans may include pain control,
chemotherapy and surgical resection of tumors; and
WHEREAS, Education and counseling along with monitoring of
local, systemic and chronic symptoms and neurocognitive
impairments are other elements of NF care; and
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WHEREAS, Survival rates are improving with earlier diagnosis,
advances in molecular biology and neuroimaging, specialized
treatment centers and NF-specific research teams; and
WHEREAS, These teams investigate gene regulation, immune
markers, nutrient intake, tumor suppressor proteins, pain
intensity and drug safety; and
WHEREAS, Each NF syndrome is an orphan disease and each NF
patient is unique, making precision medicine and identification
of genetic, epigenetic and environmental risk factors priorities
for continued research; therefore be it
RESOLVED, That the Senate designate the month of May 2019 as
"Neurofibromatosis Awareness Month" in Pennsylvania.
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