Bill Text: PA HR784 | 2011-2012 | Regular Session | Introduced

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Bill Title: Designating April 15, 2012, as "Familial Dysautonomia Awareness Day" in Pennsylvania.

Spectrum: Slight Partisan Bill (Democrat 24-12)

Status: (Passed) 2012-06-19 - Adopted (197-0) [HR784 Detail]

Download: Pennsylvania-2011-HR784-Introduced.html

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PRINTER'S NO. 3760
THE GENERAL ASSEMBLY OF PENNSYLVANIA
HOUSE RESOLUTION
No. 784 Session of2012
INTRODUCED BY DEAN, HENNESSEY, CALTAGIRONE, WATERS, GEORGE, KIRKLAND, JAMES, MICOZZIE, LONGIETTI, SONNEY, GINGRICH, NEILSON, YOUNGBLOOD, STABACK, D. COSTA, ROSS, BRADFORD, MANN, O'NEILL, GOODMAN, V. BROWN, FABRIZIO, SCHMOTZER, KULA, WILLIAMS, READSHAW, HESS, DONATUCCI, STERN, GEIST, DeLUCA, M. O'BRIEN, SCAVELLO, KORTZ, MILLARD AND DiGIROLAMO, JUNE 18, 2012
INTRODUCED AS NONCONTROVERSIAL RESOLUTION UNDER RULE 35, JUNE 18, 2012
A RESOLUTION
Designating April 15, 2012, as "Familial Dysautonomia Awareness
Day" in Pennsylvania.
WHEREAS, Familial dysautonomia, also known as FD and Riley-
Day syndrome, is a rare genetic disease that affects the
autonomic and sensory nervous systems of children from birth;
and
WHEREAS, It is estimated that one in 27 individuals of
Eastern European and Jewish ancestry is a carrier of the gene
for familial dysautonomia; and
WHEREAS, The most striking symptoms of familial dysautonomia
are reduced sensitivity to pain and temperature and the
inability to produce tears; and
WHEREAS, It affects every major system of the body, causing
severe respiratory, cardiac, orthopedic, digestive, renal and
vision problems; and
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WHEREAS, Children with familial dysautonomia lack the most
basic reflexes and instincts, resulting in an inability for
their bodies to function normally; and
WHEREAS, Children affected by familial dysautonomia cannot
control their blood pressure or heart rate, they lack the
ability to suck at birth and the ability to swallow properly and
are at a greater risk of developing pneumonia; and
WHEREAS, Familial dysautonomia was once thought to be a fatal
childhood disease with most patients expected to live to only
five years of age; and
WHEREAS, Advances in treatment have dramatically extended
life expectancy, but children with familial dysautonomia still
suffer from chronic and often debilitating symptoms that prevent
them from leading normal lives; and
WHEREAS, The average lifespan of the familial dysautonomia
population is approximately 15 years of age; and
WHEREAS, The major causes of death are the result of
pulmonary complications or sudden death due to autonomic
instability; and
WHEREAS, Due to medical advances, it is projected that babies
born with familial dysautonomia within the last five years will
have a 50% chance of surviving to 40 years of age; and
WHEREAS, There is no cure for familial dysautonomia, but
treatments are supportive and preventative; and
WHEREAS, Supportive therapies for familial dysautonomia
include medications to maintain and regulate cardiovascular,
respiratory and gastrointestinal function and surgical
interventions that include fundoplication, gastrostomy, spinal
fusion and tear duct cautery; and
WHEREAS, General population genetic screening is now
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available, and such screening can significantly reduce the
frequency of new cases of familial dysautonomia; and
WHEREAS, It is imperative that there be greater public
awareness of this serious health issue, and more must be done to
increase activity at the national, state and local levels to
promote screening and to support the patients as well as their
families; therefore be it
RESOLVED, That the House of Representatives designate April
15, 2012, as "Familial Dysautonomia Awareness Day" in
Pennsylvania.
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