THE GENERAL ASSEMBLY OF PENNSYLVANIA

SENATE RESOLUTION

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.