Bill Text: PA SR47 | 2009-2010 | Regular Session | Introduced

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Bill Title: Designating the week of March 16 through 20, 2009, as "Familial Dysautonomia Awareness Week" in Pennsylvania.

Spectrum: Slight Partisan Bill (Democrat 14-5)

Status: (Passed) 2009-03-10 - Introduced and adopted [SR47 Detail]

Download: Pennsylvania-2009-SR47-Introduced.html

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PRINTER'S NO. 636
THE GENERAL ASSEMBLY OF PENNSYLVANIA
SENATE RESOLUTION
No. 47 Session of2009
INTRODUCED BY LEACH, STOUT, LOGAN, ERICKSON, FONTANA, WASHINGTON, DINNIMAN, FERLO, HUGHES, WOZNIAK, PILEGGI, BOSCOLA, O'PAKE, PIPPY, COSTA, STACK, WILLIAMS, EARLL AND GREENLEAF, MARCH 10, 2009
INTRODUCED AND ADOPTED, MARCH 10, 2009
A RESOLUTION
Designating the week of March 16 through 20, 2009, as "Familial
Dysautonomia Awareness Week" in Pennsylvania.
WHEREAS, Originally reported in 1949, familial dysautonomia,
also known as Riley-Day Syndrome, is recognized as one of
several hereditary sensory and autonomic neuropathies; and
WHEREAS, Familial dysautonomia is an autosomal recessive
genetic disorder that affects the autonomic and sensory nervous
systems; and
WHEREAS, Evidence of the disorder may be noted from birth,
although neurologic deterioration progresses with age; and
WHEREAS, It is estimated that one in 27 people of Ashkenazi
Jewish descent are carriers of the familial dysautonomia
mutation which is found in males and females equally; and
WHEREAS, Because familial dysautonomia has been noted almost
exclusively in Ashkenazi Jews, it is included as one of the
Jewish genetic diseases; and
WHEREAS, Current survival statistics indicate that a newborn
with familial dysautonomia has a 50% probability of reaching 40
years of age; and
WHEREAS, Familial dysautonomia affects tear production,
swallowing, temperature regulation and sensitivity to heat or
pain; and
WHEREAS, Other symptoms include excessive sweating, certain
gastrointestinal, circulatory and respiratory conditions, speech
and motor incoordination, poor growth and scoliosis; and
WHEREAS, Familial dysautonomia patients can function
independently in the absence of major disabilities with early
treatment; and
WHEREAS, There currently is no cure for familial
dysautonomia, but some available treatments can improve the
length and quality of life; and
WHEREAS, The mission is to find a cure for familial
dysautonomia by funding relevant research programs, to provide a
support network aimed at addressing the needs of patients and
families and to promote education and awareness programs in the
medical community and the public; therefore be it
RESOLVED, That the Senate designate the week of March 16
through 20, 2009, as "Familial Dysautonomia Awareness Week" in
Pennsylvania.
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